RF Uterine Ablation can cause uterine cancer

viola682
viola682 Member Posts: 2
in Uterine/Endometrial Cancer #1
I just joined this board today, and I was moved by the tamoxifen stories. I don't think the medical community to this day takes women's health as seriously as men's health.

I never took tamoxifen, but have recently been diagnosed with uterine cancer, stage 3C already. It has spread around to the lymphs in the torso, but does not yet appear to have gotten into the spine, bladder, bowels. The one question the various doctors I have seen so far asked is "did you have any vaginal discharge, or bleeding, or spotting?" and it seemed to them very puzzling that I could have a cancer started in the uterus and never had this most tell-tale signal. Oh, I am 53, by the way.

Back in my early 40's, about 10 years ago, I had a radio-frequency uterine ablation. Once that was done, there were no more menses. Menopause still came years later, as my uterus and ovaries were still intact. The reason I had the RF ablation was for some fibroid cysts, and what I was told back then, was that the RF ablation was a simple, outpatient procedure, could avoid a hysterectomy, the only danger was if by chance I became pregnant after that, so don't get pregnant.

The gynecologist oncologist I saw a couple days ago, tried to do a biopsy of the uterus, but could not. The womb was scarred shut. In his opinion it was from the RF ablation. Also in his opinion, my uterus is now swollen to about 3x the size it should be and is filled with clots, blood, etc, that should have been coming out, and if it had, I would have known, MUCH EARLIER, that I need to see a doctor. I am so upset! No one told me, when I had that procedure, it could lead to a very much delayed diagnosis of cancer. I would have said lets remove the uterus, all the fibroids, etc, and then not need to take any chances.

Women need to get the word out, ask questions, ask what are any complications, no matter how remote the likelihood! So we can be truly informed and make the best decisions for ourselves.

Most sincerely,
Viola

Comments

  • fanniemay
    fanniemay Member Posts: 53
    #2
    Sorry, but I don't know what
    Sorry, but I don't know what ablation is. I know it was a shock for you to hear the word cancer. When I had my biopsy my womb was also closed...my dr. used a forceps to open it. When I got my diagnosis I was also very angry at the drs. for not requiring women to have more uterine biopsys(at least once a year after the age 40). I asked my gyn/onco this question and he said "you really think so" Sometimes we have to be our own advocates I guess. Since my diagnosis, I have read all I can find on my type of cancer. Sounds like you might have to have a hysterectomy to get a biopsy. Try not to worry about it too much until they give you your test results(i.e. staging)
  • jazzy1
    jazzy1 Member Posts: 1,379
    #3
    Viola
    Sorry to read this story. I have a good friend who has periods which are from hell and has been pleading with her OB to have a hysterectomy as I had. Instead her OB suggested the ablation which did help her rough periods, but hasn't stopped them yet and yes she could even at age of 48 yrs get pregnant. One thing her OB told her, no don't want to do hysterectomy now as too many other things that can affect your health .... loss of bone density, heart issues, etc.

    What I've learned, our bodies are meant to cycle on their own naturally....not adding ablation, etc, just because one wants this procedure to stop the rough periods. Even with forcing a hysterectomy as don't want periods, etc. If we allow our bodies to go with the natural flow of going from monthly periods to normal stopping into menopause without adding in hysterectomies we're better off. Easier said then done I know, as some things are so painful as "turbulent monthly periods".

    Makes us stop and think....
    Jan
  • txtrisha55
    txtrisha55 Member Posts: 693 Member
    #4
    I am so sorry that you have
    I am so sorry that you have been forced to join this site. I went through menopause early, by 40 I had completely stopped by 1996. In 2004, I started spotting blood so by Gyn did a D&C, she found polyps but removed them. Everything came back ok. Bleeding stopped. July 2010 and all past years clean Pap. Sep 2010 had colonoscopy, clean. March 2011, Major bleeding & bad pain. Went to Gyn Dr, she did not do any testing, no exam, just set me up for another D&C with hysteroscope Mar 25. I had the D&C, she came out and told my daughter afterwards while I was in recovery, that I had polyps again but it was ugly in there. Everything sent to pathology and told April 1st I had MMMT cancer cells in the uterus. My Mom had a soft tissue sarcoma on her leg but Drs said that was probably environmental. She used poisons on the yard in shorts back in the days. Now 2011, 20/20 hind sight I would have asked for a complete hysterectomy so maybe would not have had uterine cancer show up. I have now gone through the hysterectomy and chemo treatments. No sign of the disease as of 12 Set CT Scan. I have another CT Scan on 22 Nov so I will see. Could the Dr have told me the likely hood of the polyps growing back and causing cancer, I do not know but had I done some research back in 2004, I might have chosen to have the hysterectomy. I had already had my child and did not plan having anymore. Not using it so it could have come out.
    After reading what an ablation is, it sound pretty close to a D & C. Dilation and curettage, is a surgical procedure. Dilation means to open up the cervix; curettage of the uterus is done by scraping the uterine wall with a curette instrument or by a suction curettage. It is done on outpatient under local anesthesia. RF Uterine Ablation - uses a small telescope-like device called a hysteroscope which is inserted into the uterus through the cervix, to help doctors safely confirm proper probe placement and to see the area they are treating. Then the Dr insert instruments into the uterus that has a radio-frequency rod that emits energy to destroy the uterine lining. After the procedure, the endometrium heals by scarring, reducing or removing the possibility of future uterine bleeding. Both affect the uterine lining, one scraps and one burns, either way it does something to the cells of the uterus.

    Welcome to the site, lots of information and lots of caring and knowledgeable ladies to help guide you through the journey. Ask lots of questions of the gynonc drs and do not be afraid to ask for a second opinion. trish
  • viola682
    viola682 Member Posts: 2
    #5
    txtrisha55 said:

    I am so sorry that you have
    I am so sorry that you have been forced to join this site. I went through menopause early, by 40 I had completely stopped by 1996. In 2004, I started spotting blood so by Gyn did a D&C, she found polyps but removed them. Everything came back ok. Bleeding stopped. July 2010 and all past years clean Pap. Sep 2010 had colonoscopy, clean. March 2011, Major bleeding & bad pain. Went to Gyn Dr, she did not do any testing, no exam, just set me up for another D&C with hysteroscope Mar 25. I had the D&C, she came out and told my daughter afterwards while I was in recovery, that I had polyps again but it was ugly in there. Everything sent to pathology and told April 1st I had MMMT cancer cells in the uterus. My Mom had a soft tissue sarcoma on her leg but Drs said that was probably environmental. She used poisons on the yard in shorts back in the days. Now 2011, 20/20 hind sight I would have asked for a complete hysterectomy so maybe would not have had uterine cancer show up. I have now gone through the hysterectomy and chemo treatments. No sign of the disease as of 12 Set CT Scan. I have another CT Scan on 22 Nov so I will see. Could the Dr have told me the likely hood of the polyps growing back and causing cancer, I do not know but had I done some research back in 2004, I might have chosen to have the hysterectomy. I had already had my child and did not plan having anymore. Not using it so it could have come out.
    After reading what an ablation is, it sound pretty close to a D & C. Dilation and curettage, is a surgical procedure. Dilation means to open up the cervix; curettage of the uterus is done by scraping the uterine wall with a curette instrument or by a suction curettage. It is done on outpatient under local anesthesia. RF Uterine Ablation - uses a small telescope-like device called a hysteroscope which is inserted into the uterus through the cervix, to help doctors safely confirm proper probe placement and to see the area they are treating. Then the Dr insert instruments into the uterus that has a radio-frequency rod that emits energy to destroy the uterine lining. After the procedure, the endometrium heals by scarring, reducing or removing the possibility of future uterine bleeding. Both affect the uterine lining, one scraps and one burns, either way it does something to the cells of the uterus.

    Welcome to the site, lots of information and lots of caring and knowledgeable ladies to help guide you through the journey. Ask lots of questions of the gynonc drs and do not be afraid to ask for a second opinion. trish

    Thanks
    Thanks so much for the responses, there are so many things that can happen, I guess. Life can take some crazy turns, I guess.

    V
  • amusicfrog11
    amusicfrog11 Member Posts: 1
    #6
    I am so sorry

    I have had an ablation too, noone told me the risks either. My mom just had Uterine Cancer, surgery got it all thank god.  But the Dr. did say I could get it too partialy because it's hereditary and being overweight.  Being overweight he said it increased the chances by 8 fold.  We just saw him on Tuesday but I forgot to ask him how likely I am after haveing an ablation.  I am so sorry this is happening to you, I will keep you in my prayers.  But thank you for sharing your story!

    God Bless,

    April

  • MAbound
    MAbound Member Posts: 1,175 Member
    edited January 2017 #7
    Hello AMusicFrog

    Welcome to the group, I am so glad that you aren't here because you already have cancer, but are on the alert for it because of your mother.

    You don't say what kind of uterine cancer your mom has..there are a number of different sub-types and some are more aggressive than others.

    The one your doctor is talking about is probably endometrial adenocarcinoma which is hormone driven. Since fat cells produce estrogen along with the ovaries, it is a big risk factor for this cancer and a very good reason to work at losing weight if you don't want to lose it the hard way with surgery, chemo and/or radiation. I lost 30 lbs during treatment without trying, but now I'm going on Megace therapy where I'm going to have to battle weight gain again. It's not fun.

    These are the risk factors for this cancer: 1. Things that affect hormone level balance such as early onset menses before age 12; late onset menopause (risk increases with the more menstrual cycles you have over a lifetime); no pregnancies; never on birth control (the pill regulates hormones so it has a protective effect); obesity (produces excess estrogen); history of breast or ovarian cancer; tamoxifan use; Polycystic Ovarian Syndrome, pre-diabetes or diabetes (stimulates cell mutations when blood sugars are abnormal). 2. Lynch Syndrome (genetic mutation) 3. Age (risk increases near or after menopause) 4. History of endometrial hyperplasia (precursor to cancer) 5. History of prior pelvic radiation 6. High fat (Western) diet and lack of excercise (promotes an acidic environment in the body which stimulates cell mutation)

    Metformin has a protective effect against this cancer (but not for all of the sub-types) by controlling the blood sugar risk factor. It also has anti-proliferative, anti-invasive, and anti-metastatic effects and aids the effectiveness of hormone therapy (progesterone) by inducing progesterone receptor expression and recovery of progesterone sensitivity. It's hard to get this prescribed without being diabetic yet because a lot of doctors aren't aware of the emerging science on it and it would be an off-label use.

    Have you ever considered or been offered genetic counseling to test for Lynch Syndrome? It would be helpful to know that if you are contemplating profalactic hysterectomy given your mom's cancer and the issues that led to your ablation. It would tell you (and your doctors and insurance companies) if you really need to consider it as an option in spite of the issues you'd being dealing with afterwards (early menopause and the health issues that can lead to as well as loss of structure that puts you at higher risk for pelvic organ prolapse in the future). 

    Again, I'm so glad you are here and looking into what you can do to prevent this cancer that has no helpful screening test like breast cancer has. Sometimes PAP smears find it, but often they don't. A lot of us here wish we had known sooner what we know now. Keep learning!

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