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Thread: HI

  1. #1
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    HI

    was just dx with stage 1 endometrial cancer they said the exact path report said low level carcinoma in the endometrium they gave me to options radical hysterectomy or d and c every 3 months with megestrol, progesterone.....for life I guess. I am 9 years post menopausal have never had an issue. never been on a hormone.......I had a clean pelvic ultrasound which was clean except for the thickening of the endometrium, had the biopsy that showed this.......had a clean pap and mammo.......Would love some input. as to people that have had this and what treatment they opted for I am worried about both is there any other treatment options......THANKS and God bless us.....

  2. #2
    Moderator Top User jorola's Avatar
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    Hi there,

    Sorry you have to find yourself here. I have moved your thread to this section so that others that have fought this same battle can share their stories with you.

    Good thing is that they have caught it very early. Also good to see you are doing your research. While I have not had this condition I do know that with a hysterectomy you are done and over with cancer. I am hoping others here can chime in with their thoughts and experience that may help you in this journey.

    I wish you all the best and please keep us posted.

    Jodie
    Wife to husband with squamous lung cancer stage 3 b
    dx - April 20/14
    tx started May 20/14 - radiation and chemo
    June 23 - chemo finished
    June 24 - tumor 1/3 the original size
    July 4 - radiation finished
    July 8 - PET scan shows tumor almost gone, lymph nodes back to normal
    Married July 19/14
    Sept 9/14 - repeat can shows tumor continues to shrink more, no new spots. New coughing and pain due to chest infection or side effect of radiation.
    Sept 19/14 - not infection but pneumonitis, place on dex for 4 weeks
    Oct 22/14 - now off of dex and facing even more symptoms of withdrawal
    Dec 16/14 - pretty much nothing left but a scar
    April 7/15 - ditto scan and screw you stats
    Oct 6/15 - more scarring but still cancer still gone
    Feb 2016 -scan the same
    Aug 2016 - more of the same

  3. #3
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    Dear Moosatch,
    I'm sorry you're having to deal with endometrial cancer. However, I echo jorola's sentiment that it's very early days cancer-wise and it's likely that a hysterectomy will put an end to it.

    It sounds like you might be a prime candidate for a second medical opinion as you seek other treatment options. Is there a gyno-oncologist you can see?

    I think one of the most important lessons I took from my experience with cancer is to find a doctor you trust and respect.

    If you're worried about a hysterectomy I can tell you I had one laparoscopically 5+ years ago for stage 3b endometrial cancer. Although I felt a little paltry and sore for a week or so, it was really no big deal. A very old woman told me before my surgey "you won't miss it." She was right: I don't miss it.

    I wish you the best. You're on your way to being a cancer survivor.

  4. #4
    Mood such. Sorry you are one of our group. I agree with the last poster's suggestion of a second opinion with an oncologist. A hysterectomy now is not the draining surgery of days gone by. Take it out and get on with a cancer free life. No worries every few months. Most women I know are happy with their decisions to have the surgery. This is a stressful time for you but very doable. Eight hours after my total hysterectomy I was home in my own bed. You will probably be a candidate for robotic surgery. Good luck. Carolee123

  5. #5
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    I would do the surgery and don't torture yourself with Megace. Took it, I am still having issues with stomach, I was recently diagnosed with acid reflex. Just do the surgery and save your life. Sorry for the late response.

  6. #6
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    To Carolee123
    I just wanted to inform you & everyone here in the Forum that the FDA has discouraged the use of LAPAROSCOPIC POWER MORCELLATORS...starting in late 2013 hazards and/or dangers reported with the bladed powered tools which gynecologists used to perform hysterectomies through small incisions...is spreading and worstening cancer and undetected cancer in women diagnosed with uteran cancer..This procedure has been performed on more than 50,000 women a year and many hospitals did not report the dangerous risks and deaths associated with these machines..
    I ...myself was a candidate of this procedure..so a very young doctor who literally told me that ..thats the way that she was going to handle my hysterectomy...Imagine my SHOCK when told this...I asked her if there was other alternatives and she out right lied to me..She steered the subject her way to this machine.. also telling me that out of the 3 hospitals that she worked out of..that we had to wait 3 weeks or more for this machine..LOL...I simply could not believe the nerve of this doctor..People please be careful and not everyone has your best interest at heart..Do your research...I obviously was in the wrong dr.'s office so I left and never went back..I think it was very dispicable how there are still doctors out there that would still use this machine to cut up the uterus thats still inside of you by the way and spread the cancer cells all over the abdomen..its common sense for Gods sakes..How do these people sllep at night..So when I went to get a 2nd opinion at a nearby university called Tulane Medical Center..I met a wonderful, caring doctor who was very honest.and agreed about the use of the machines and how they do not use them....Come to find out he went over my lab report with me and not only did I find out that I had more than 2 pollops..I had a grade 3 cancer also he told me that my uterus was too large to even try a vaginal removal...He saidthat he was shocked and disturbed that the 1st..doctor would even consider chopping up my uterus when it was in this condition...So I wanted him to open me and also do sort of exploratory surgery..He told me that we would have to open me up..I am good with this out come..The point is that these machines are very dangerous and I truly felt so sorry for a 51 year old woman who trusted her doctor and had the procedure done with the power morcellator and was dead within one year..I think that technology sometimes takes away whats really necessary is LIFE...and we need doctors who we can trust when we talk to them ...they should always go over everything with the patient risks, dangers...The good, the bad, and the ugly..so to speak..I am sorry that there are doctors out there who really truly think that they know everything and lose or dont have anty compassion for their patients and some just think of them as a number or a statistic..Its truly sad...I know from experience that there are truly very kind ,caring,compassionate,understanding,well capable and very smart & talented doctors out there...Please take my advice and find one..It does not matter if u have to go through ten doctors to find the one that is right for you...If you are not good at smelling B.S. a mile away ..then do your research and I promise you that in your first conversation with him or her..You will know if they have your best interest at heart..and you will know if they are full of crap or not..I am sorry tom blunt but I am saying this because I just went through all of this and I feel it necessary to share my story even though it could have turned out to be a nightmare..DO YOUR RESEARCH!!!! ASK YOUR DOCTOR QUESTIONS... If he or her are true blue they will answer them truthfully and they will not sugar coat anything and they will not put u in harms way!! Thak You..I will post later on about my progress in the future..I will also like to add..good old fashion doctors are the best..They are very knowldgeable and they have the experience to be able to fight for you...Isn't that what we want?? A fighting chance...not stupid machines because its easier or cuts recovery time in half..Be on guard about this..Have a good day people!!

  7. #7
    Administrator Top User lisa1962's Avatar
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    The OP was moosatch and has not returned to the forum since her initial post in August, 2016. To clarify roxyqueen’s response within this thread, the following is the exact statement from the FDA regarding the Morcellation procedure. Any questions concerning this procedure or any other type of procedure and/or treatment should be discussed with your Medical Professional. I am closing this thread.


    Please read the following from the FDA:

    Laparoscopic Uterine Power Morcellation in Hysterectomy and Myomectomy: FDA Safety Communication
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    Date Issued: April 17, 2014

    • Health Care Providers
    • Medical Professional Associations
    • Cancer Advocacy Organizations
    • Health Care Facilities/Hospitals
    • Women with Symptomatic Uterine Fibroids who are Considering Surgical Options
    • Manufacturers of Devices used for Minimally Invasive Surgeries
    Medical Specialties: Pathology, Internal Medicine, Nursing, Obstetrics/Gynecology, Oncology
    Product:
    Laparoscopic power morcellators are medical devices used during different types of laparoscopic (minimally invasive) surgeries. These can include certain procedures to treat uterine fibroids, such as removing the uterus (hysterectomy) or removing the uterine fibroids (myomectomy). Morcellation refers to the division of tissue into smaller pieces or fragments and is often used during laparoscopic surgeries to facilitate the removal of tissue through small incision sites.
    Purpose:
    When used for hysterectomy or myomectomy in women with uterine fibroids, laparoscopic power morcellation poses a risk of spreading unsuspected cancerous tissue, notably uterine sarcomas, beyond the uterus. Health care providers and patients should carefully consider available alternative treatment options for symptomatic uterine fibroids. Based on currently available information, the FDA discourages the use of laparoscopic power morcellation during hysterectomy or myomectomy for uterine fibroids.
    Summary of Problem and Scope:
    Uterine fibroids are noncancerous growths that develop from the muscular tissue of the uterus. Most women will develop uterine fibroids (also called leiomyomas) at some point in their lives, although most cause no symptoms1. In some cases, however, fibroids can cause symptoms, including heavy or prolonged menstrual bleeding, pelvic pressure or pain, and/or frequent urination, requiring medical or surgical therapy.
    Many women choose to undergo laparoscopic hysterectomy or myomectomy because these procedures are associated with benefits such as a shorter post-operative recovery time and a reduced risk of infection compared to abdominal hysterectomy and myomectomy2. Many of these laparoscopic procedures are performed using a power morcellator.

    A number of additional treatment options are available for women with symptomatic uterine fibroids including traditional surgical hysterectomy (performed either vaginally or abdominally) and myomectomy, laparoscopic hysterectomy and myomectomy without morcellation, laparotomy using a smaller incision (minilaparotomy), deliberate blocking of the uterine artery (catheter-based uterine artery embolization), high-intensity focused ultrasound, and drug therapy. Evidence demonstrates that, when feasible, vaginal hysterectomy is associated with comparable or better results and fewer complications than laparoscopic or abdominal hysterectomy3.
    Importantly, based on an FDA analysis of currently available data, it is estimated that 1 in 350 women undergoing hysterectomy or myomectomy for the treatment of fibroids is found to have an unsuspected uterine sarcoma, a type of uterine cancer that includes leiomyosarcoma. If laparoscopic power morcellation is performed in women with unsuspected uterine sarcoma, there is a risk that the procedure will spread the cancerous tissue within the abdomen and pelvis, significantly worsening the patient’s likelihood of long-term survival. For this reason, and because there is no reliable method for predicting whether a woman with fibroids may have a uterine sarcoma, the FDA discourages the use of laparoscopic power morcellation during hysterectomy or myomectomy for uterine fibroids.

    Recommendations for Health Care Providers:
    • Be aware that based on currently available information, the FDA discourages the use of laparoscopic power morcellation during hysterectomy or myomectomy for the treatment of women with uterine fibroids.
    • Do not use laparoscopic uterine power morcellation in women with suspected or known uterine cancer.
    • Carefully consider all the available treatment options for women with symptomatic uterine fibroids.
    • Thoroughly discuss the benefits and risks of all treatments with patients.
    • For individual patients for whom, after a careful benefit-risk evaluation, laparoscopic power morcellation is considered the best therapeutic option:
    o Inform patients that their fibroid(s) may contain unexpected cancerous tissue and that laparoscopic power morcellation may spread the cancer, significantly worsening their prognosis.
    o Be aware that some clinicians and medical institutions now advocate using a specimen “bag” during morcellation in an attempt to contain the uterine tissue and minimize the risk of spread in the abdomen and pelvis.
    Recommendations for Women:
    • Ask your health care provider to discuss all the options available to treat your condition and discuss the risks and benefits of each.
    • If laparoscopic hysterectomy or myomectomy is recommended, ask your health care provider if power morcellation will be performed during your procedure, and to explain why he or she believes it is the best treatment option for you.
    • If you have already undergone a hysterectomy or myomectomy for fibroids, tissue removed during the procedure is typically tested for the presence of cancer. If you were informed these tests were normal and you have no symptoms, routine follow-up with your physician is recommended. Patients with persistent or recurrent symptoms or questions should consult their health care provider.

 

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