Continuance
Hope1023
had to start going to a womans hospital out of state, that is when I
found out the name of it.
They began talking about the reoccurance rate, and the options of
the next steps, for if and when it does come back, My tumor, what they
could get of it anyway was 3 lbs but I am not sure of the size. They
took me out of school for the rest of the year, I had to do home
schooling, and they said that they would still pass me, when I got my
report card it said that I had failed. The principle and I got into a
huge argument, so I quit and earned my G.E.D. It has been almost 3
years since my surgery, and so far it has not come back.
It is nice to know that I am not alone, and there are other people
going through just what I am.
sheba
situation. If you have any questions about me, I will do my best to answer
any I can. I know the feeling of having a bad doctor. One of the local
doc's mis-diagnosed me 2 x. It's terrible.
I have what is called Recurrent AA. That's what they call it after it
becomes repetitive. My first tumor was 14 lbs. The next 2 were pretty small,
It really important to have scans done on the same MRI each time as the
machines are all calabrated differently.
I'm gearing up to have a follow up surg. soon. I've getting my colonostomy
reversed. It's exciting and really scary.
Good Job getting your GED! your a survivor!
Hope1023
told my boyfriend that a person has a better chance of winning the
lottery than getting this. I do have a question actally. I know that
there is only 2 cases where the tumor caused death, but was you scared
when you found out what you had. I know that it has been almost 3
years since I had my surgery, and so far everything is ok, but when I
think about it, knowing that it is still there because they couldn't
get it all cut out, it scares me really bad. I don;t know if it is
because I know what I am going to have to go through when it comes
back, but it really does scare and worry me.
I have a great support system, I hav my family and my boyfriend, I am
a normally happy person, so even though it does scare me, I put a
smile on my face and try to see the lighter side of everything. There
was so many times at the beginning where I jus wanted to break down
and cry, because you never think it could happen to you. But every 3
months when I go for my MRI and every 6 months when I go to Pittsburg
to see my doctor it makes me realize that it can happen to anyone.
well thats enough of my rambling. I would love to hear more about you
and your situation. I know this may sound bad, but it is exciting to
find other people going through the same thing I am. I live in West
Virginia, a small state and there are no support groups, other than
family.
Thanks, Brittany
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sheba
I know the feeling of being really scared. I have a 16 year old son who has
been having a hard time dealing with this situation. So I know what it means
to put on a strong face and smile. It's very difficult and sometimes I
really just get over whelmed. I have a support group but it's not the same
situation and sometimes the support group makes me really depressed. I
like to write and put my energy into art and stuff like that.
I also use adivan which is for anxiety, Somedays are just going to be adivan
day's. it helps me get out of my mind when I am feeling out of control and
scared. It's also helpful with the MRI'S if you get panic attacks. I did
not have panic attacks until I was 35. I stated getting them when they told
me everything was fine. It turmed out they had misdiagnosed me again from
2002-2007 as having a hernia, which is almost laughable.
am also an east coaster. From NYC, I have family in NY and Atlanta,
have you been to slone keddering in Manhattan?
I also get accupunture which is helping my stress level well being. I
really enjoy that, my surgery last January was huge. I am still recovering
and that will just take time.
Stay strong, it's so comforting to know that there is a group of us, even if
we are small. We are shining stars!
Have a great day!
Sheba
Hope1023
center in Pittsburgh, it is the only place reletively near that know a
little about this. I write a lot too, that is sort of my outlet. The
part that scares me the most about this is that there is a chance that
I wont ever be able to have a baby of my own. I know that is a small
thing to think about with the whole situation, but they told me that
when it comes back, they are probably going to do a historectomy. I
was so mad at my docs when they told me they were not able to get the
whole tumor, and that is will eventually come back. It took me forever
to realize why they couldn't get it all. Everything is a waiting game
with this.
Did you have any side affects with your surgery? I think that I have
nerve damage, I am still numb in places. When and if it is ever gone,
they told me that they were going to have to do reconstructive surgery
to help with the scars and put everything back in place, I think? Do
you have idea about what causes this? I was told that it has something
to do with estrogen, but I am not sure. Like I said before, even now
at 20 I can't get the docs to tell me what is going on.
I have never done accupuncture, maybe I should try it. I have hears a
lot of people talking about it. Thanks for telling me about your
situation, I know sometimes it is hard to tell somethings to complete
strangers, but it has been really helpful and I appreciate it.
Brittany
neety
removed. I take tamoxifen to keep it at bay as my tumour is hormone
receptive which means oestrogen and progesterone help it to grow, some
people don't have a hormone dependent one tho so surgery is the only
option, do you know if yours is??
sheba
hours due to the scar tissue. 45 minutes just working on that part. I have
tried alternatives like mayan abdominal massage. this is a great tecnique to
learn and so for yourself. If you have had any kind of radiation on your
abdomen it can really help.
Since I had radiation therapy in 1998 they radiated my whole abdomen &
pelvis. This is no longer done because of the damage it caused. Nowaday's
they place in receptors and they radiate specific places in the body. It's
much better that way.
My tumor was 14 lbs the first time they removed it. I had no clue it was
even in there during my pregnancy. However I could not carry full term and
did not discover why until many years later when they discovered the tumor.
My Son is happy and healthy! he was a preemie.
Chemo does not work on this tumor as it grows to slow for that kind of
therapy to work.
I've have had many problems from repeat surgurys. Numbness, nerapathy and
lymph-edema in my right leg. It hurts and I try to stay away from pain
meds.
Mostly because they present a whole other problem for my colonostomy.
Right now I travel 350 miles to see my Doctors down in San Fran. After
messing around with obgyn's and sergeons I finally went to a rare tumor
oncologist, Thats because the person reading the MRI's up here was not
trained well at see this kind of tumor. From 2002-2007 I went mis-diagnosed
again..
That's why it's so important to see an oncologist.
I get combination of Accupuncture and Accupressure. I like them both. It
support my body in staying healthy. Helps lower my stress level too!
Hope you are ahving a great day Brittany! So nice to hear from someone!
Hope1023
have to have another surgery, they said it will eventually grow back
they just arent sure when, they wanted to start me on the depo shot. I
am not sure what that will do. Its bad, I have no health insurance so
the only time people we see me is when I pay in full up front. With
the specialists and MRI's it gets expensive. They were talking about
radiation and hestorectomies for when it regrows, which scares me to
death.
ronnie
radical surgery to remove my AA followed by extensive radiotherapy of
my abdomen - this was done in 2006. (It must be just in the USA that
they don't do this anymore??). The surgery I had has left me with a
scar from my belly button to just below the pubic hair line, and my
belly now rather resembles a bottom!! But.....my last MRI was clear,
and I am due to have another in June. Fingers crossed!
When my consultant (in the UK), did the operation, I had a full
hysterectomy and although at the time I was 42, I don't have any
children......I had sort of made up my mind that children would not
happen - I had previously suffered with Fibroids, and they were never
sure that I could have them - it was difficult to know that the choice
was no longer there - however, I do appreciate that this is much more
difficult for you due to your young age. The surgery to remove my
tumour took 6 hours,and I did have a nasty complication where my
euretha tube dissolved, and they had to make a new one out of my
bladder, another operation, 5 weeks after the first one, that took
another 6 hours!! Still....I have come out of the other end, and have
very few problems, apart from going through an early menapause.I take
each day as it comes, and am keeping my fingers firmly crossed that my
next mri is clear. My consultant/surgeon is fantastic thankfully, he
is a very kind man and has done alot of research following my case.
Whilst it is sad that we are victims of this tumour, it is good that
we have all "found" one another!! When mine was diagnosed in 2004, I
searched and searched the internet, but felt that I was the only
person with the tumour! as this forum was not in existance!! Thanks
Neety for setting it up!! Neety and I are both in the UK, and we have
been in contact with text and e mail for some months now, and we are
finally meeting up tomorrow evening as I have to travel up country in
the UK for business.
This forum gives us all the opportunity to share our experiences!!
Sarah
Hope1023
any information about AA on the internet. Everything says the same
thing and is in the medical jargon that not everyone can understand.
It is pretty cool that you and Neety are going to meet. It is great
that she started this forum, so that the people who choose to use it
can feel free to talk about their experiences.
It is good that your last MRI was clear, and you are right, keep your
fingers crossed that the next one is too. I wish you luck.
Brittany
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