Aggressive Angiomyxoma (cancer of the vulvar)

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  • Tannersmom
    Tannersmom Member Posts: 2
    #22
    MAR08 said:

    Angiomyxoma
    I am living in the uk and was diagnosed with aggresive angiomyxoma in 2009. Diagnosis followed a series of miss diagnoses. i had a large tumour in my pelvis and a further tumour in my groin. The specialist at the Royal Marsden had seen one before which was slightly reassuring. I has a large operation and problematic recover but have been offered no further tretment.Three momths after surgery the angiomyxoma had started to grow again and they are monitoring it with yearly, I suffer a great deal of pain, the surgery damaged some of my nerves causing bladder and bowel problems. i would love to get a second opinion even if I have to travel and am interested to read that a number of you have had active treatment with chemo and radiotherapy. I would love to hrar from people as I am currently feeling let down by the system
    Mary

    symptoms of recurrence
    Hello, My name is MaryBeth. I am very pleased that I found this discussion board.
    A little info about me: I was first diagnosed with aggressive angiomyxoma in 1999. I had a recurrence in 2003. That spring and summer I had 2 surgeries including a radical vulvectomy. I saw a second oncologist and I chose not to take Lupron because it was tested to have minimal effacacy on my particular tumor. And with the side effects I felt it would not be worth it. In 2007 I had a hysterectomy as well as my bladder removed.
    I had been having regular MRIs. This past winter "something" showed on the scan in my perineum as well as my liver that was inconclusive but warranted monitoring. I am due for another MRI.
    This spring i started having nondescript symptoms of extreme fatigue, muscle aches weakness and generally feeling crummy. I also have mild/moderate discomfort or pressure in my perineum. I recently visited a general internal medicine doc who somewhat dismissed my complaints as dehydration caused by this summer's extreme heat.
    I wonder if anyone else has experienced this generalized almost continual flu-like feeling.
    My situation is complicated by a couple of factors. I currently have kidney stones and frequent urinary tract infections. I also have Cerebral Palsy and am a wheelchair user. Therefore my "bottom" gets little relief from pressure and the gyne oncology surgeon felt could cause proliferation of scar tissue in the areas surgery was performed.
    I would welcome any input or feedback anyone would offer.
    Thanks.
    By the way, I have a beautiful service dog named Tanner - which explains my user name. :-)
  • KristenR
    KristenR Member Posts: 5
    #23
    Tannersmom said:

    symptoms of recurrence
    Hello, My name is MaryBeth. I am very pleased that I found this discussion board.
    A little info about me: I was first diagnosed with aggressive angiomyxoma in 1999. I had a recurrence in 2003. That spring and summer I had 2 surgeries including a radical vulvectomy. I saw a second oncologist and I chose not to take Lupron because it was tested to have minimal effacacy on my particular tumor. And with the side effects I felt it would not be worth it. In 2007 I had a hysterectomy as well as my bladder removed.
    I had been having regular MRIs. This past winter "something" showed on the scan in my perineum as well as my liver that was inconclusive but warranted monitoring. I am due for another MRI.
    This spring i started having nondescript symptoms of extreme fatigue, muscle aches weakness and generally feeling crummy. I also have mild/moderate discomfort or pressure in my perineum. I recently visited a general internal medicine doc who somewhat dismissed my complaints as dehydration caused by this summer's extreme heat.
    I wonder if anyone else has experienced this generalized almost continual flu-like feeling.
    My situation is complicated by a couple of factors. I currently have kidney stones and frequent urinary tract infections. I also have Cerebral Palsy and am a wheelchair user. Therefore my "bottom" gets little relief from pressure and the gyne oncology surgeon felt could cause proliferation of scar tissue in the areas surgery was performed.
    I would welcome any input or feedback anyone would offer.
    Thanks.
    By the way, I have a beautiful service dog named Tanner - which explains my user name. :-)

    Aggressive Angiomyxoma Support Group Facebook
    Hello to all my fellow A.A survivors.My name is Kristen Regan I am 29 years old and have been diagnosed with A.A
    There simply isn't enough support groups for A.A. I have created a group for us on Facebook called "Aggressive Angiomyxoma Warriors". Please join my group and invited your supportive loved ones to join as well. I hope it will serve as another safe place to share our own personal experiences with A.A and to provide support to one another.

    http://www.facebook.com/groups/406570069392560/
  • Marycloud9
    Marycloud9 Member Posts: 1
    #24
    KristenR said:

    Aggressive Angiomyxoma Support Group Facebook
    Hello to all my fellow A.A survivors.My name is Kristen Regan I am 29 years old and have been diagnosed with A.A
    There simply isn't enough support groups for A.A. I have created a group for us on Facebook called "Aggressive Angiomyxoma Warriors". Please join my group and invited your supportive loved ones to join as well. I hope it will serve as another safe place to share our own personal experiences with A.A and to provide support to one another.

    http://www.facebook.com/groups/406570069392560/

    New AA diagnoses
    Hello my name is Mary. I am 35 years old. I was diagnosed with Agressive Angiomyxoma yesterday. The lump I found over one year ago was misdiagnosed as a batholin's cyst swelling. The tried to drain the cyst only to discover that draining wasn't possible and that a mass was present. An initial needle biopsy was done about 3 weeks ago but a sample was not able to be gathered. I went into surgery about one week ago. The surgery started off with a cut sample biopsy which found the tumor to be malignant. So the doctor excised the entire tumor. To excise the tumor part of my vaginal wall was cut away. I was healing nicely but now have an infection which is being treated with antibiotics in the hospital. I am frightened of having to go through this procedure again if the tumor returns and also frightened of the future areas that may need to be cut away. I am hoping to find a doctor in the USA who has some experience with AA. If anyone has a reccomendation please email me at marycloud9@msn.com

    BTW I noticed the original poster of this string has AA. But some of the other posters have cancer of the vulva. There is a distinct difference between the two. Cancer of the vulva is a sometimes metastasizing form of cancer involving epithelial tissue and can be staged. AA cannot be staged, doesn't metastisize, and is a cancer of connective tissue. Cancer of the vulva is rare, AA is extremely, extremely rare.
    Good luck to everyone,
    Mary
  • jbutler323
    jbutler323 Member Posts: 1
    #25
    korja01 said:

    AAM
    Hi

    I hope things are well with you. I recently got diagnosed with this tumour and am looking for a surgeon who has operated on this tumor...my surgeons have expressed a fair amnt of uncertainty in how to proceed. Any recomendations. email (js_koruth@yahoo.com)

    Thanks

    AA

    Amazing to see so many posts about agressive angiomyxoma. I was first diagnosed in 1990, after incorrect diagnosis of bartholin's cyst. I was very fortunate to have a curious pathologist send the tumor to Yale. The Yale pathologist had just read a journal article about this (then) rare tumor. Less than 100 cases back then. I have had 10 surgeries to remove the recurrences. Was put on lupron in 2006 - 2011. I didn't have some of the horrible side effects from the drug and it stopped the tumor in its tracks. When I turned 54, I asked the surgeon if I could stop the injections to see if I might be in menopause. At that time, I was feeling numbness in my feet. I stopped the lupron, no tumor recurrence, but I have neurological symptoms. Dizziness, ataxia with balance issues, numbness in feet and hands. I have been worked up and nothing can be found. Brain MRI, lumbar punctures to rule out MS, blood work to rule out Lyme or heavy metals, vestibular testing to rule out vertigo. Three neurologists, two ENT's, one internist, and one Naturalpath can find nothing wrong. Good news is that I seem to be in menopause and the tumor is not growing. Bad news that I have these neurological issues that have greatly impacted my life. 

    My doctor at Yale has gotten a lot of mileage out of my case. Lots of journal articles were published. He has quite a few other patients with AA, but mine has been the most aggressive.

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