One of the most soul shattering events that can
ever happen is for a woman to be told that she has breast cancer and
must undergo a mastectomy. There is no justice in the occurrence. What
is even (perhaps) worse is that for a great percentage of
the women, the situation could be made far less traumatic if they were
made aware of all the options available to them.
There are many options that will allow a woman
to walk into a hospital one day for the mastectomy and walk out a few
days later looking very much the same as when she walked in. She is
fighting back and winning and can see it. She is no longer a victim.
Our personal experience with support people is
that they work hard to help people accept what has happened and to help
them have a positive attitude. They do not seem to want to get involved
in suggesting that reconstruction can be one of the most constructive
things for the patient and their overall health. We have contacted a
number of support groups suggesting that they try to get hospitals to
(at least) give out information on where and how mastectomy and reconstruction
can be performed in what is essentially a single operation. The response
to date has been ----- none. Actually, we seem to annoy the support
people we talk to when we try to get them to make
reconstruction information available
There are real advantages to "simultaneous" mastectomy and
reconstruction
Other than the obvious psychological and medical benefits to the
patient of looking the same before and after mastectomy, the surgeon
who is doing the reconstruction can suggest and actually mark the
optimum incisions for least visible
scarring. The cooperation between surgeons will often eliminate the
scarring caused by one surgeon removing skin that will ultimately have
to be replaced if the reconstruction is done at some future
date.
Which brings us to the purpose of this
page.
We will hopefully get enough input from enough
people and get a sufficient number involved that the word will get
out. Every woman everywhere,
will know that mastectomy does not have to equate to disfigurement. All
will know that a single hospital stay for mastectomy and reconstruction
is an available option which can even be less expensive in the end.
It can become "It happened and I beat it and here
I am like I was before. I'm not a survivor, I'm a winner".
If you are about to undergo a mastectomy,
you should follow the links below to see what options you have. If
you have already had one, these links will help you decide on what form
of reconstruction would suit you, if like most individuals you have
a self-image that you would like to keep somewhat intact. That is not
egotistical, for many if not most it is simply good medicine.
It is fighing back and winning and knowing that you have won every time you
see your reflection.
If you have the time to investigate the various
available procedures that are available, by all means do it but really
the most important thing is doing something positive. First on the list
is having a skin sparing mastectomy if possible. Saline implants are
relatively inexpensive and can be used as an interim if not permanent
treatment for the return to normal. They would probably facilitate
future reconstruction using a different procedure should you wish it.
A discussion with the surgeon doing the mastectomy and local reconstructive
surgeons should be a first step. There are surgeons in each of those areas
who can work together so that the operations become what is effectvely
a single event.
Learn from the experiences of others who have
gone through the same thing.
Really, life is still sweet.
Although initially this site will primarily focus
on information on the DIEP flap procedure, information on all forms of reconstruction is needed and hopefully we will ultimately have a good repository of information on all options available.
For those with questions (more links to be added in the future)--
The American Cancer Society is truly a great organization. They
always seem to have somebody available that you can talk to who seems
to know what you as an individual, are going through. Unfortunately
their links to all of the various reconstruction procedures are not
complete. They also do not seem to have any information on the option of simultaneous
mastectomy and reconstruction which to us, is something that should
be routine.
At least one (and for many, the optimum) procedure was initially
only performed by the two doctors in the U.S who developed it.
More doctors have been trained in the
procedure and so there may be many more who can perform the operation
satisfactorily. Thanks to the "net", it is easy to conatact a doctor's
former patients and find out first hand, just what their results were.
See the link below to get information on the DIEP flap procedure.
It avoids many of the problems of the TRAM flap operation with no
inherent detrimental residual problems.
Coming soon: Politics and breast cancer and how you can help cure the
increase in the U.S..
At the requst of Jennifer Winter, information on a Diccovery Channel Special Living with Cancer with Ted Koppel.
My comment on what I see in the preview is that it does not seem to stress the very important thing of beating the cancer which at least in breast cancer is the norm, not the exception.
Many states have laws that make insurance companies pay the cost of
reconstructive surgery for the insured. We would like to compile a list
of states where this is so. In some states existing laws may sound good
but are
quite ineffective. The insurance companies won't pay for the optimum procedure
as
they will only allow the patient to go to "participating" surgeons.
Some of these surgeons may not be qualified to do the optimum reconstruction
and others may be booked up and unavailable.
This can be changed and it could be quite easy if EVERY woman
who were to go in for a mastectomy were to say "I want to be put back
together at the same time" and not accept "No" for an answer. There
really are hospitals where both operations are commonly done together.
There is a Federal law (click here for summary)
that provides for reconstruction with/after a
mastectomy but it seems that it is often ignored. We are looking for
information to share so any facts will be welcome.
Please take the time to use the
"View Comments" link below and the link on that page for your comments/letter to tell
those who come to this site of your experiences. Help others make an informed decision
on how to make their life return to normal. You need not sign your letter
if you do not want to. Thank you. Click here to Contact us if you wish. We'll usually get back to you within a day.
