Lupus and Radiation

[Soundy]

Not sure where to put this so sticking it here

I had an appointment yesterday with a nuclear oncologist
to discuss killing my benign brain tumor with fractionated
radiation treatments... My neuro surgeon wanted me to look
at all options before making a decision on which way to go...
radiation or open surgery...

Generally radiation is safer with fewer complications than
open surgery... But the NO told me yesterday that many lupus
patients end up with the radiated tumor not healing ... they burn
it and it dies over several months... he said he wouldn't start
treatment if I was having a flare and if the treatment put me into
a flare he would stop and I would have to have open surgery
anyway... treatment involves 10 -20 treatments with radiation
and would mean driving 2 hours up and 2 hours back everyday for the
amount of time needed ... the stress of going back and forth
would probably be enough to set off a flare

Another option offered was to stay in the lodge attached to
the hospital for duration of treatments ...I have two kids at
home to take care of and also stress of being stuck up in Nashville
for 10-20 days , that kinda freaks me out too...

I guess I am just talking... I was hoping that the radiation
would be a good option for me ... I will lose all hearing in my
right ear and my balance nerve on that side and will have to
re-learn to walk after the open surgery... but now it looks like
the option of radiation is out for me

Thanks for listening

[Maia]

Just ask yourself this question: are you going to wish you had at least tried the radiation? If you want to at least try it, then perhaps you should really make an effort to try it. Someone could watch your kids for a few weeks, relative or neighbor or friend? And then you could stay at the lodge and just have the treatments and rest rest rest in between.

Did he give you any statistics as to the percentage of lupus patients for whom the treatment fails (especially in comparison to the % of "normal" patients for whom it fails).

You really are in a tough spot and I feel for you. (((((Soundy)))))
Good luck whatever you decide to do. Your post made me grateful that I **just** need my gallbladder taken out...

[Okie]

Hi Soundy
You certainly have alot of decisions to make! The good news is that it is benign which is fantastic! Now to deal with all the treatment options. Have someone go with you when you ask all the questions of your neuro surgeon. A friend of mine had a brain tumour & she was so glad that she had someone with her since she forgot most of what was said. Also you are undoubtedly under alot of stress--try to stay calm--very important for lupus patients. Focus on the positive and bring a trusted friend or relative with you to appointments so they can absorb any info that you may overlook or forget. Not a bad idea to write down things when you visit your doctor. I think there may be a support group for people who have had brain tumours. Usually the hospital will have this info in their neuro surgery wards. I know my friend was given lots of info at the hospital. Maybe the internet may answer some questions although be careful of the source. I agree that you should stay at the lodge. Alot less stress for you.
Besides if you have a trusted relative or friend who can look after you children, you may recover much quicker & they will have a healthier mom.
I truly feel for you & it's not easy. My prayers are with you!
Take Care
Shirley(Oklahomadays 0r Okie)

[Soundy]

That is a problem... I would have to have the kids shuffled
among my husband and my sons who are grown so that
everyone doesn't miss work and the kids are taken care of...My
in-laws are right next door but I can not trust my MIL to even
keep them for an afternoon... she forgot she was watching
them one afternoon and left to go somewhere and they got
off school bus and sat alone for about 2 hours til my husband
got home... she made little blunders before but that kinda nixed
her as a care giver for them...

The treatments would take about an hour a day... I would not
rest up there by myself... I would worry about what was going
on at home even if my husband could get the whole time off
and keep the kids ...

Lupus patients have about a 50% higher failure rate than non
lupus patients with radiation mostly from having to stop
because of flare...for open surgery there is very little difference
in the risk % wise ...open surgery has a longer recovery initially
6-8 weeks to be back up and around where as with radiation you
don't have as many early on problems but the it isn't considered
a success for a year and they are sure the tumor isn't growing ...
you also have to have MRIs every 6 months to a year to make
sure that growth has not re-started... also some risk of developing
brain cancer from radiation (5-10% according to different studies)...
also you don't have benefits from the radiation for up to 18 month...

I have been living with this for 2 and a half years just watching
the tumor... it had not grown from the fall of 2004 til fall of 2006
then from Oct til now almost doubled... some patients have them
and are monitored for years and never have to have anything
done and some times they hit accelerated growth and have to
be dealt with...my neuro has a woman he has been monitoring
for 15 years and hers has not grown

The nuclear Oncologist said he treats lupus patients that have
cancer but this being benign he is not sure that it is right for
me because I have lupus...I am going to talk to another
nuclear surgeon for his opinion but it looks like open
surgery is in the cards...

They have told me that 2-3 months to research and decide was
fine , but not to wait 6 months... I figure get kids out of school
for the summer and Day Camps over with with both Girl Scouts
and Cubs ... take my kids to the beach... they have never been
and I have to be real about this...I could die from the treatment
or surgery and I want to see them when they see the ocean
for the first time...then do get it taken care of one way or
another in in July

And would you believe for the most part I am unbelievably
calm... I have not got real emotional or upset... I am not happy
about this but I don't think freaking out will help...I have never
been one to panic or fall apart at things and don't plan on
starting now... I have enough family and friend that are willing
to cry and get mad and worry for me :)

then again one day something may snap and I will run off through
the woods screaming:wink2: