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Aggressive Angiomyxoma (cancer of the vulvar)

Inlovewithlife
Posts: 2
Joined: Jan 2011

I was Diagnosed with Aggressive angiomyxama about a year ago. Has anyone ever heard of this? I am curious about other treatment options I'm currently on harmone therapy Tamoxifen, one side effect is the unbearable hot flashes. Im in my early 30's, so not ready for this!

sunrose
Posts: 1
Joined: Jan 2011

Hello Inlovewithlife,

I am from Australia and was diagnoised with this very rare tumor back in 1990.

In June 2010, I decided to search on the internet to see if I could find others who
have experienced this tumor and I came across the following site:

http://www.rarercancers.org.uk/forum/view_topic?topic_id=218

I have included my story on the above forum and there are others who are currently experiencing what you are going through. Have a look and read through their stories, I believe that it may help you.

I hope this helps. All the best.

Sunrose

korja01
Posts: 6
Joined: Aug 2011

Hi,

I have the same tmr. It took 2 mnths to diagnose this. They were going to perform a sort of radical surgery.Now they want to try hormone therapy first to see if they can decrease the size prior to surgery. Anyone with experience with this approach. Did you already have surgery?

beth_sawyers
Posts: 1
Joined: Aug 2011

I am not sure what Aggressive Angiomyxoma is as my doctor has never called it that.I had(cancer of the vulvar) and had a partial vulvectomy as well as laser surgery.I also after that had biopsies and removal of lymph nodes in my groin area.My cancer though rare also spread to the rectom.She could not so surgery on that to remove it with out causing to much damage so I went through intense radiation and chemo.I am about 7 months post treatment and it is already groing back.I have many more problems health wise (congenital lymphocytopenia,chronic dissiminated histoplasmosis and now they have found a spot on my left breast during my mamogram)

Any way besides the other health issues and back to the treatemnt for the vulvar cancer I am having bad side effects left from the radiation I am assuming.My legs hurt me terribly and can not walk more than 2 blocks with out it feeling as if the muscle in my leg is tearing loose from the bone.Any one on here having post radiation pain? Everyone I have talked to was in the chamber only 5-10 mins.My treatments were 22 minutes long,5 days a week for 8 weeks.

I have pictures on my FaceBook account of the third degree burns it caused me,open sores,boils etc.Chemo was no fun either I had a very bad reaction to the 5-FU but I know it was the radiation that is causing me all this pain.Any one have anything to share about this or are still going through this?

Thanks,

Beth

Ruby3
Posts: 30
Joined: Dec 2010

Hi Beth, I had 28 treatments of radiation. Each treatment was only a minute long. I am truly shocked to hear how long yours was. Mine was also placed only on the area concerned. I do still have pain. My treatments ended on 2 August 2011.

All the best to you.

jtsmom0514
Posts: 6
Joined: Oct 2011

Hi Beth. My name is Pam and I am 40 years old. I was diagnosed March 1, 2011 with Stage IIIC squamous cell carcioma of the vulva. March 15, 2011 I had a partial radical vulvectomy, with margins very near the rectum. Fortunately, the surgical margins were clear, but 4 of the 12 lymph nodes removed from my right groin were positive. After 6 weeks of healing from surgery, I then began chemo and radiation. Originally they were going to do 5-FU and Cisplatin weekly during my radiation, but decided to only use Cisplatin. The chemo resulted in no ill side effects, but like you the radiation was terrible. My radiation consisted of 30 treatments, Monday thru Friday and each one lasted about 15 minutes. The burns were terrible, I still have dark looking skin, only a few spots are starting to look pink again and walking any distance causes leg pain and fatigue. My last radiation treatment was June 10, so I thought by now I would be getting more strength and endurance back, but that is not the case. Other resources have told me this could last up to a year post treatment.

Would love to talk/chat more about this. Please feel free to contact me. My email is jtsmom@chibardun.net or look for me on Facebook, Pam Charrette (Rice Lake, WI). Would like to see your pictures, to see if they compare to what mine looked like.

Thanks,
Pam

juliamary
Posts: 11
Joined: Nov 2011

Hi Pam,
Like you my last treatment for radiotherapy was on june 6th, also like you i thought i would be feeling more normal, but anything but, the radiation was aweful i too have dark spots and leg pain it feels like the musles are really tight. Some days i feel almost normal and can get about and do lots of things, then i get very down because 3 or 4 days later i am feeling so tired and not wanting to do much, going back to work at the moment is not an option as i know i would not stick to getting out of bed early every morning. I am glad i am not alone, i am from the U.K and do not know any one who has had this type of cancer or the side effects of radio, most people cannot understand why i am not back to normal, please do repy, it's so good to hear of other people with the same.
Many Thanks
Julia

juliamary
Posts: 11
Joined: Nov 2011

I have had the same, i had alot of intensive radiotherapy to the vulva, pelvis and groin area, i finished treatment 5 months ago, and yes i am still very tender in all area's, like you my legs hurt, bending down is a problem, also have had alot of back ache, do not know how long this will go on for, have had 1 clear scan, but worried now about the next one. where is your cancer growing back, will they do more radiotherapy? I still feel really tired and that is a problem, do let me know how you are, xx

secondtime11
Posts: 1
Joined: Sep 2011

I was diagnosed with Aggressive Angiomyxoma back in 2005 and had surgery to remove the mass. I just had sugery last week for the second time for the same type of tumor. This time it was smaller in size but I think that is because I know what to look for the second time around. They are talking about hormone therapy this time around. I was not put on anything the first time around. I have been the first patient that they have seen with this type of tumor. There is not a lot of info out on this. I have seen more in the last few years. I am hoping that this will be the last time that I have to have surgery for this. I know that there is a high percentage for reoccurance.

korja01
Posts: 6
Joined: Aug 2011

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

jbutler323
Posts: 1
Joined: Sep 2013

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.

korja01
Posts: 6
Joined: Aug 2011

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

korja01
Posts: 6
Joined: Aug 2011

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

korja01
Posts: 6
Joined: Aug 2011

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

korja01
Posts: 6
Joined: Aug 2011

hi

Yes I am in a similar situation..i am now on hormonal therapy and the tumor has shrunken a bit.. Im having trouble deciding when to operate. I am also looking for a second opinion. Im happy to talk over the phone/email.

KristenR
Posts: 5
Joined: Feb 2012

My name is Kristen. I am currently 28 yrs old. I have been diagnosed with AA. My doctors are located at Dana Farber Boston.
During the summer of 2009 I noticed a bump on my vulva. It caused my vulva to be red and swell up. My gynecologist thought it was a bartholins cyst. I tried a few antibiotics but it did not disappear. In November, I had a surgery to remove the cyst but during the surgery they discovered I had a tumor.They removed almost all of it (that is what I was told) and I was diagnosed with Aggressive Angiomyxoma.
I started seeing an oncologist in Jan and had a MRI done. It was discovered that the tumor was still there and has grown. (I had a feeling something like that had happened because my vulva never stopped swelling). I met with some great doctors at Dana Farber (Dr. Butrynski being one of them). I started on a shot called Lupron which cuts off the hormones and puts the body into menopause.
After several months of being on the Lupron (and enjoying all the lovely side effects of menopause) I met with the doctors and got another MRI done. The MRI showed that my tumor had grown smaller so the shot was working. I had to continue with the monthly shots of Lupron at a higher dose for several months more. I had another MRI done and it was decided since the tumor did not shrink any smaller it was time for another surgery. This surgery they had to remove the tumor that had grown on the muscle of my labia up through my stomach. The surgery was a success.
I visit Dana Farber every 3-6 months to get a MRI and an exam to stay on top of this. The issue with Aggresive Angimyxoma is that it is a very rare disease. Doctors do not know what causes it or how to prevent it from occurring they only thing they do know that it most likely wil occur again and when it does it can aggressively grow through my body and cause damage to my organs.
I am please to say that I am 28 now and have not had a recurrence. Even though I am off the Lupron and back to having normal periods I still suffer from hotflashes. Fromt having 2 surgeries I am numb on one side of my labia.
I have yet to meet someone who has been diagnosed with this disease. It is always helpful when I can speak with others around my age who have had to deal with tumors.. I know first hand how frustrating and scary it can be to have to go through this at a young age. I am always thinking about/fearing that the tumor will grow again. When I first got diagnosed with this I felt really angry and confused- thinking what did i do to deserve this? I have grown stronger from this experience and i have to have faith that If it reoccurs Ill just have to kick its ass again :) I am forever grateful for the excellent team of doctors I have at dana farber.
Please feel free to contact me via this site or my email regan_kristen@yahoo.com It is amazing to find others who had been diagnosed with this disease . I have a great oncologist but since AA is rare doctors do not know much about it.

Kili12
Posts: 1
Joined: Mar 2012

I was diagnosed with this very rare tumor Aggressive Angiomyxoma back in 2008; I was 43 at the time. It was located in the ischiorectal fossa which is near the perineum and rectum. All visible tumor was removed and no recurrence to date. I feel very fortunate the surgeon could remove the tumor but as you know it does have a high recurrence and I do get yearly MRI's. It was great to find your post as well as the others. It is very rare and many physicians have never heard of it or will see this only once in their career. I did travel to MD Anderson in Houston, really no help there. Please keep me posted, we can always learn from each other. My MRI was just last month so I'm good to go for another year. Take care.

Inlovewithlife
Posts: 2
Joined: Jan 2011

Hi, This sure is a rare Disease but i am finding out that there are more people out there with this AA than reported. I have visited and joined a few other cancer sites that you might find helpful rarercancers.org, cancerresearchuk.org and a small group of us ladies all struggling with AA are members of a AA group on facebook, search Aggressive Angiomyxoma and you should find it. Best of luck to all. I am scheduled to have my first surgery in May. A bit nervous but hopeful.

KristenR
Posts: 5
Joined: Feb 2012

Hello Ms. InLoveWithLife I would love to join your group on facebook but I can not seem to find it :( My e-mail is regan_kristen@yahoo.com please feel free to contact me. Thank you!

wendysbam
Posts: 1
Joined: May 2012

I have had three surgeries. The first one was with a doctor who was an idiot and misdiagnosed me. He said I had a Bartholin's Cyst which I did'nt. I went to my reputable doctor and she operated and biopsied it and said it was an aggressive angiomyxoma. I went to an oncologist and he told me he had never or probably would never see another in his lifetime of this type of because it is so rare. I have had three surgeries in this area. Not fun. My first doctor was a quack and I probably should have sued for malpractice because he misdiagnosed me and said it was a Bartholin's Cyst. Well obviously it was not and I have since had two surgeries and my doctors told me it was benign but every time it comes back you have a better chance of it being malignant. So, I have had three vaginal surgeries and I think it may be back again. I don't know for sure but I don't have a good feeling about it. The first surgery I had was in 1988 and the second was in 1989 because the first doctor was a quack. But my doctor told me every time it comes back you run the risk of it becoming malignant. I saw an oncologist after my first surgery with my real doctor and he said it is so rare that I am probably the only case he will ever see in his lifetime. That doesn't sound so promising. I feel like a freak of nature. I hate this. After my last surgery in 1994 felt like that was it but now I don't know. This really sucks because I have so much to live for after my jerk of a husband died and everything else. It is really not my time. I deserve some happiness in my life and I intend to have it. This is just ridiculous and I'm tired of it. I refuse to live this life and I don't intend to give up on life. I am going to beat this no matter what.

KristenR
Posts: 5
Joined: Feb 2012

Quick summary about me. I am a 29 year old female from Boston, Massachusetts. I do not have any children. I was diagnosed with AA in 2008. It was initially diagnosed as a bartholyns cyst but it was soon discovered it was AA. I had a surgery in 2008 to remove a cyst that had grown on my labia and in 2009 I had a tumor removed that grow on my labia up to my abddomian. This past April after an MRI was performed it appear that I may have a small tumor starting to grow or scar tissue (could be either) but we are keeping an eye on it. I am always very interested in speaking with others who have been diagnosed with AA. Please e-mail me regan_kristen@yahoo.com. I will further share my story.

Hang in there everyone!

MAR08
Posts: 1
Joined: Jun 2012

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

Tannersmom's picture
Tannersmom
Posts: 2
Joined: Jul 2012

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
Posts: 5
Joined: Feb 2012

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
Posts: 1
Joined: Aug 2012

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

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