View this page "My story"

[neety]

Click on http://groups.google.com/group/aggressive-angiomyxoma-forum/web/my-story
- or copy & paste it into your browser's address bar if that doesn't
work.

[Vancof]

Thanks Neety for sharing your story. That's great that you stayed on
your research. I had a bad experience with a doctor earlier on and it
made me realize that I was responsible for researching this condition.
But now I've switched doctors and it has made a huge difference!
Please let me know how the tamoxifen works out and if it was able to
shrink the tumor. You know, I asked my doctor about the metastisis and
she said that it could've been that they were the wrong diagnosis as
AA. My doctor said the cells of aggressive angiomyxoma are quite a
different structure than cancer cells, so there may be some truth in a
wrong diagnosis for the tumors that metastasized. But keep hope, I
have been free of reoccurence for 5 yrs!

[neety]

Hi again, i asked my specialists at the royal marsden in london
whether it was true that 2 women had died of mets from the AA and they
said yes. I am not too worried tho, 2 cases from 150 is pretty low.
I go to london for my MRI next week so will see if the Tamoxifen is
working, the few people that have tried it have had success with it,
so here's hoping!! Talking of doctors, my own consultant at my local
hospital admitted he had never heard of an AA but was quite happy to
assume it was the angiomyofibroblastoma and since my diagnosis in July
I have never even heard from him!! A bit of consultant snobbery I
suspect, can't have a humble nurse proving them wrong can they!!lol

[kellypb5]

hi i am 24 and tried a different hormone treatment to what you are
talking about, it worked in my case shrank the tumour but you are only
allowed it in small doses as it decreases your bone density, i had
several operations to remove the tumour that was successful, but then
returned earlier on this year, am now being closely monitored as 5
months pregnant and the tumour has began to grow, it would be nice to
chat to others that are in the same situation

> > have been free of reoccurence for 5 yrs!- Hide quoted text -
>
> - Show quoted text -

[neety]

Hi and welcome to our very small forum!! Well that's 4 of us now,
only another 146 to find apparantly!! It's a nightmare this tumour
isn't it, and you are so young too, how many surgeries did you have?
Are you in England? did you try zoladex rather than tamoxifen then?
I have just had a calcium test and was ok at moment, am dreading
having to stop the treatment, i just had another MRI to see if it's
shrinking but am waiting for the doc to ring me with the result. Good
luck with your pregnancy and glad you found the forum!!

On Nov 8, 10:45 pm, kellypb5 <kellypaul...@aol.com> wrote:
> hi i am 24 and tried a different hormone treatment to what you are
> talking about, it worked in my case shrank the tumour but you are only
> allowed it in small doses as it decreases your bone density, i had
> several operations to remove the tumour that was successful, but then
> returned earlier on this year, am now being closely monitored as 5
> months pregnant and the tumour has began to grow, it would be nice to
> chat to others that are in the same situation
>

> On Oct 29, 1:55?pm, neety <neety.1...@fsmail.net> wrote:
>
>
>
> > Hi again, i asked my specialists at the royal marsden in london
> > whether it was true that 2 women had died of mets from the AA and they

> > said yes. ?I am not too worried tho, 2 cases from 150 is pretty low.

> > I go to london for my MRI next week so will see if the Tamoxifen is
> > working, the few people that have tried it have had success with it,

> > so here's hoping!! ?Talking of doctors, my own consultant at my local

> > hospital admitted he had never heard of an AA but was quite happy to
> > assume it was the angiomyofibroblastoma and since my diagnosis in July

> > I have never even heard from him!! ?A bit of consultant snobbery I

> > suspect, can't have a humble nurse proving them wrong can they!!lol
>
> > On Oct 25, 11:36 pm, Vancof <ahart...@wowway.com> wrote:
>
> > > Thanks Neety for sharing your story. That's great that you stayed on
> > > your research. I had a bad experience with a doctor earlier on and it
> > > made me realize that I was responsible for researching this condition.
> > > But now I've switched doctors and it has made a huge difference!
> > > Please let me know how the tamoxifen works out and if it was able to
> > > shrink the tumor. You know, I asked my doctor about the metastisis and
> > > she said that it could've been that they were the wrong diagnosis as
> > > AA. My doctor said the cells of aggressive angiomyxoma are quite a
> > > different structure than cancer cells, so there may be some truth in a
> > > wrong diagnosis for the tumors that metastasized. But keep hope, I
> > > have been free of reoccurence for 5 yrs!- Hide quoted text -
>

> > - Show quoted text -- Hide quoted text -

[Kellyp...@aol.com]

hi, yes i did try the zoladex had 7 doses although you are meant to have 6 last year it reduced the tumour dramatically and began killing it off, altogether i had about 5 operations, then got the all clear but a few months later i knew it was back an mri confirmed it,i had another one a couple of months later that confirmed it hadn't changed they were going to wait for my next monthly cycle so they could start the zoladex again but my period never came, had a mri at 10 weeks that confirmed the tumour was still the same,but 2months later it has began to grow, now waiting to see what the next step is, how about you

kelly

[Anita Keal]

God you must have been devastated that it started to grow again. I hope i can stay on my pills for longer than you cos i am older maybe.  I am just waiting to find out if it's shrunk with the pills, will find out on monday.  You had lots of surgery too, nightmare, i didn't accept the radical surgery cos the first surgery was bad enough and i can't afford to be off work sick again.  So i suppose i hope the pills keep it at bay for a few years but i do expect i will have to have surgery eventually.

========================================
Message Received: Nov 10 2007, 08:04 PM
From: Kellyp...@aol.com
To: aggressive-ang...@googlegroups.com
Cc:
Subject: Re: Discussion on my-story

[Kellyp...@aol.com]

hi, what r the tablets you are taking, let me know whether its kept it at bay

[Anita Keal]

well, i went for my scan last week then rang yesterday and found out that the tumour has not changed at all despite the tamoxifen, but he said it's possible that the pills have stopped it, they don't know.  But I have now developed 2 huge masses on my ovaries, they look like cysts on the scan but he wants me to have a ca125 blood test asap to make sure.  They are 7-8cm in size, I did have a 4.5cm one on my scan in feb but nothing was mentioned in July but now these 2 big ones have appeared, he said they can't leave them at that size so he will speak to the consultant and ring me again to tell me what they will do.  I know they will want to perform a laparotomy and take the ovaries out, it would make sense to take the ovaries cos they are what are feeding the tumour effectively.  I am gutted and so worried cos i can't afford to take sick leave yet again as my bills wont get paid, so will have to see what he says when he rings me back.  What surgery did you have?  did you have damage to other bits and pieces when they did it??  Its possible that the tamoxifen have caused the 'cysts' tho!

========================================
Message Received: Nov 13 2007, 07:24 PM

From: Kellyp...@aol.com
To: aggressive-ang...@googlegroups.com
Cc:
Subject: Re: Discussion on my-story

[Vancof]

Hi Kelly,

I find it so interesting that so many people are on hormones or anti
hormone pills to treat the tumor. My doctors at The University of
Michigan (US) said that because I still want to have kids, they
wouldn't put me on any anti hormonal meds since it could cause me to
go into menopause. I haven't heard of anyone here being treated with
the other medications for this. Which hormone treatment are you on?
I'm looking at trying to get pregnant end of this year, and am meeting
with a holistic doctor before hand to supplement my body and try to
prevent a reoccurence that way. Did your tumor reoccur before
pregnancy or during? How fast is it growing and how large? What are
your treatment options? You're the first person I've found who's going
through a pregnancy with this conditon. Please let me know how you are
doing and how things are progressing.

On Nov 8, 5:45 pm, kellypb5 <kellypaul...@aol.com> wrote:
> hi i am 24 and tried a different hormone treatment to what you are
> talking about, it worked in my case shrank the tumour but you are only
> allowed it in small doses as it decreases your bone density, i had
> several operations to remove the tumour that was successful, but then
> returned earlier on this year, am now being closely monitored as 5
> months pregnant and the tumour has began to grow, it would be nice to
> chat to others that are in the same situation
>

> On Oct 29, 1:55?pm, neety <neety.1...@fsmail.net> wrote:
>
>
>
> > Hi again, i asked my specialists at the royal marsden in london
> > whether it was true that 2 women had died of mets from the AA and they

> > said yes. ?I am not too worried tho, 2 cases from 150 is pretty low.

> > I go to london for my MRI next week so will see if the Tamoxifen is
> > working, the few people that have tried it have had success with it,

> > so here's hoping!! ?Talking of doctors, my own consultant at my local

> > hospital admitted he had never heard of an AA but was quite happy to
> > assume it was the angiomyofibroblastoma and since my diagnosis in July

> > I have never even heard from him!! ?A bit of consultant snobbery I

> > suspect, can't have a humble nurse proving them wrong can they!!lol
>
> > On Oct 25, 11:36 pm, Vancof <ahart...@wowway.com> wrote:
>
> > > Thanks Neety for sharing your story. That's great that you stayed on
> > > your research. I had a bad experience with a doctor earlier on and it
> > > made me realize that I was responsible for researching this condition.
> > > But now I've switched doctors and it has made a huge difference!
> > > Please let me know how the tamoxifen works out and if it was able to
> > > shrink the tumor. You know, I asked my doctor about the metastisis and
> > > she said that it could've been that they were the wrong diagnosis as
> > > AA. My doctor said the cells of aggressive angiomyxoma are quite a
> > > different structure than cancer cells, so there may be some truth in a
> > > wrong diagnosis for the tumors that metastasized. But keep hope, I
> > > have been free of reoccurence for 5 yrs!- Hide quoted text -
>

> > - Show quoted text -- Hide quoted text -

[Anita Keal]

Hormone treatment has been shown to reduce tumour progression, if your tumour is hormone dependent as mine is then this is a good route to take, it works on breast cancer patients and they are hormone dependent tumours so i can see why it would work for us.  i am using tamoxifen but i am 42 with no uterus so not so much of a risk for me.  Our other friend is only 24 and obviously starting a family so hormone treatment can't be used for too long, mainly because of bone density at that age, she may develop osteoporosis.  surgery is not always the answer and in some respects we are all guinea pigs with this tumour because it's so rare, they can only try different treatments based on valid research i suppose.  I have had a few side effects but not particularly menopausal ones, it doesn't actually give you the menopause as such, that's what i thought at first, women can use it then still get pregnant.  I really don't want more surgery because i don't fancy the risk of having to have a colostomy bag so am quite happy to use the hormone treatment for as long as possible.  However, it looks like i am heading for having my ovaries removed now that i have developed these huge 'cysts' for which i have just had my ca125 blood test to try and rule out any cancer in them.

========================================
Message Received: Nov 13 2007, 11:28 PM
From: "Vancof"
To: "Aggressive Angiomyxoma forum"

Cc:
Subject: Re: Discussion on my-story

Hi Kelly,

I find it so interesting that so many people are on hormones or anti
hormone pills to treat the tumor. My doctors at The University of
Michigan (US) said that because I still want to have kids, they
wouldn't put me on any anti hormonal meds since it could cause me to
go into menopause. I haven't heard of anyone here being treated with
the other medications for this. Which hormone treatment are you on?
I'm looking at trying to get pregnant end of this year, and am meeting
with a holistic doctor before hand to supplement my body and try to
prevent a reoccurence that way. Did your tumor reoccur before
pregnancy or during? How fast is it growing and how large? What are
your treatment options? You're the first person I've found who's going
through a pregnancy with this conditon. Please let me know how you are
doing and how things are progressing.

On Nov 8, 5:45 pm, kellypb5 wrote:
> hi i am 24 and tried a different hormone treatment to what you are
> talking about, it worked in my case shrank the tumour but you are only
> allowed it in small doses as it decreases your bone density, i had
> several operations to remove the tumour that was successful, but then
> returned earlier on this year, am now being closely monitored as 5
> months pregnant and the tumour has began to grow, it would be nice to
> chat to others that are in the same situation
>

> On Oct 29, 1:55?pm, neety wrote:
>
>
>
> > Hi again, i asked my specialists at the royal marsden in london
> > whether it was true that 2 women had died of mets from the AA and they
> > said yes. ?I am not too worried tho, 2 cases from 150 is pretty low.
> > I go to london for my MRI next week so will see if the Tamoxifen is
> > working, the few people that have tried it have had success with it,
> > so here's hoping!! ?Talking of doctors, my own consultant at my local
> > hospital admitted he had never heard of an AA but was quite happy to
> > assume it was the angiomyofibroblastoma and since my diagnosis in July
> > I have never even heard from him!! ?A bit of consultant snobbery I
> > suspect, can't have a humble nurse proving them wrong can they!!lol
>

[neety]

Well, I collapsed last week and ended up at the hospital. I have a
large multiloculated 'cyst' on my ovary and they think i had a rupture
on the other side, my tummy is bloated, i feel sick all the time and
am full of gas!! Having my ovaries removed by laparotomy a week on
monday. The docs said it 'doesn't look particularly suspicious',
heard that before!! Am worried that there is malignancy, tho it's
possible that the tamoxifen has caused this. The size of the growth
and the type is more suspicious but they are very complacent about it
all, that frustrates me!

[Vancof]

Wow, that's scary. Do the doctors have any thoughts on what the cyst
might be? Endometriosis possibly? Why do they recommend having your
ovaries removed? That sounds very drastic. Please let us know how your
surgery goes next week and how things turn out. I've read some
research that these types of tumors, fibrocystic breasts and
endometriosis can all be common conditions due to hormones. I myself
also have endometriosis presented as a cyst on my ovary. Luckily, it's
been stable and the doctors have been monitoring that too. I'll say a
prayer for you that all goes well. Talk to you soon:)

[neety]

I never had endometriosis when i had my uterus, always had heavy
periods but laparoscopy didn't show anything. I ended up with a
hysterectomy after a couple of attempts at endometrial ablation
surgery that didnt really work for me. I can't see an alternative to
removing my ovaries, this 'cyst' is 12 cm and they think another one
popped when i collapsed, no point keeping them really, i am 42 and
have a hormone receptive tumour. Also they have to be careful in case
any malignancy present. My mum had bowel cancer last year and my
cousin has been fighting breast cancer since she was 34 so i wouldn't
want to mess about, best to get them out i think!!

> > - Show quoted text -- Hide quoted text -

[Kellyp...@aol.com]

i was diagnosed last year told i was the youngest to have it, never had no problems before just woke up to find the lump,i was told the same just unlucky no reason for it, mine got misdiagnosed as a bartholins cyst at first