Help! Please...Crainiotomy

Leticia in Germany has brain mets, has had previous treatment but is having a crainiotomy TODAY. I screwed up and didn't see her email to me on Saturday, pleading for information....... but here is what she wrote:

"Patty, could you please write for me in the HER2-neu forum and ask if someone have had experience with a brain Op. I wish I could do it by myself, but my eyes are worse every hour, but I believe I can still read the answers. Could you please do it as soon as posible, it may help me to avoid being so scared....thank you in ahead."

And HERE is her previous email from Friday to me:

"Dear Patty,
I haven´t written since a long time, because everything was so unsure that I didn´t want to disturb you without reason. Now there is a reason:

In my latest scan there were found 2 more lesions. It means, all 4 lesions I am having now are in fact the old ones which are growing again. It was planned (as I told you before) to do the stereotactic treatment next week, but doctors found out by the new PET scans in my head that the metastasis which were found for about 6 months whith the MRT are actually the one already treated last year. All of them! So it is not possible to try a local treatment now.

You can imagine how scared I am, because I was thinking the whole time to get GK or similar, but as I had the 2 PET scans, the neurologists told me it was not posible anymore.

The operation is planned for the 18th, but I am still very confused and shocked."

Direct experience would be most helpful to Leticia, but I know she would welcome whatever support you could provide.

thanks,
pattyz

Patty,
Don't feel too badly. I'm sure she's aware of just how many posts are entered daily and it's sometimes impossible to read eveything. Does anyone know her home e-mail? Maybe Joe and Christine?
Patty could you explain briefly what the surgery is?

Celina,
thanks...I didn't even think to post her email......but maybe that is not for me to do here... I will check with Leticia first.

Craniotomy is brain surgery to remove tumors.

love to you,
patty

Hi Patty, I am giving you my email address, should you or Letitia have any questions / comments. It is: acrobaticfan@yahoo.com

I had a craniotomy back in April, and my recovery went very well. The reason why I had the brain surgery was because I had had gamma knife in Aug '04 for one brain met. It did shrink over the winter time, but unfortunately it grew back in the same spot in the beginning of the new year. Not only did I have the craniotomy, but my rad onc had decided to implant a handful of radiation seeds onto the cavity of the brain met. I had asked him why, he said that sometimes the original met was targeted correctly and did shrink, but there might have been some micromets surrounding the stem of the original met and THAT grew. The radiation seeds are just one alternative of doing "direct" treatment to a tumor site(s).

And keep in mind that sometimes brain MRI's could show images "larger" than mets were actual in size, because edema (swelling) could light up as well. This is called "fully enhanced imaging." That occured in my case. We had previously thought my tumor was large, so my surgical team were very pleased to find that the tumor was HALF its size. It was just my surrounding edema that misled us of the tumor size.

I believe that Letitia and I had tumors in different areas, since mine was just located in the lower left cerebellum, so it didn't affect my vision nor contigence <spell?>. The only side effect of my post-surgery period time was just a stiff neck for a few days. Also, I was not allowed to drive for the first 3 weeks, just in case of a possible seizure, which I did not have any.

Please tell Letitia that I will be thinking of her and sending positive vibes her way. A craniotomy is not as bad as you might think! :-) She is blessed to have you as a caring cheerleader on her side! :-) Hugs ~ JO.

[StephN]

Last summer when we had so much discussion on the brain mets problem, Letitia was a "regular" here. She seemed to glean a lot of information here and was facing her situation with other mets bravely.
Now that the operation is over, I want to wish you a full and successful recovery, so that those mets DO NOT return again. Going into the skull must be rather frightening, but your doctors must be very good and you will be over this in no time.
All our best wishes coming your way!

To Patty for Leticia,

My sister, age 48, was diagnosed with bc mets to the brain in Oct'04 - her symptoms were headaches and some difficulty with vision. She had a craniotomy to remove the largest lesion, and the other three lesions were small enough to treat with whole-brain radiation. We were all amazed at how well she recovered from the surgery. The most difficult part for my sister was not the surgery or the radiation, but learning how to cope with the side effects of the steroid decadron (which is essential to reduce swelling both before and after surgery & radiation to the brain).

The 3 remaining lesions were almost entirely eliminated by the WBR, but then began to grow again by February. She participated in the Lapatinib clinical trial, which has been working very well at shrinking/eliminating brain mets for some women, but it didn't work for my sister. She went back on Herceptin, and since it has been keeping the rest of her body clear, her neurosurgeon said he wanted to try to remove all 3 remaining lesions (which were observed originally in Oct. -- no new mets since then). She had her second craniotomy in May, had all 3 lesions removed, and again her recovery was remarkable. She then had Sterotactic Radiation to the cavity areas. She did not have any problem with seizures after either craniotomy.

At this point in time, her nerosurgeon says there is No Evidence of Disease in her body, her headaches are gone, her vision better, she looks great, and she is slowly getting her energy back after the fatique of post-radiation. She is still every bit herself, even after 2 brain surgeries. We saw a bumper sticker that made us laught today on our way in to her Herceptin appt; I couldn't quite remember the wording tonight, and when I called her, she remembered it exactly, and she's the one who's been through strong chemo, radiations, and two brain surgeries!

I sincerely hope Letitia's surgery went well today, and that my sister's story gives her hope for a very positive outcome. God bless you both.

Marianne