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Old 11-05-2011, 01:51 AM   #1
joyce lutz
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Join Date: Oct 2009
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craniotomy info please

My daughter is scheduled for this on Monday and of course we are scared to death. If anyone has had this done please let us know if you have any advice and how yours turned out. Also what type of recovery did you have and what side effects did you have if any from the surgery and do you feel it was worth it all? My best to you all
joyce
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Old 11-06-2011, 09:55 AM   #2
Joan M
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Re: craniotomy info please

Joyce,

My craniotomy in October 2008 went very well. The tumor was in the left frontal lobe, and my brain has been clear since the surgery. Initially, I was followed up with a brain MRI every 3 months which has now been increased to every 4 months.

I was in the hospital for 4 days. The worst part was the tight bandage around my head, which was cut off after 2 days. At home, I took Decadron for 4 weeks, which is a steroid to reduce swelling. While recovering, I took a walk every day. After a week, the surgeon's office removed the staples.

I went back to work after 4 weeks. Six weeks from the date of the surgery, I had targeted radiation to the brain (5 dosages of IMRT in a week). The radiation oncologist withheld Decadron, which is often administered with radiation, but he would have added it if I felt the need. Perhaps a feeling of pressure in the head? In any case, I never did feel anything. My hair fell out in that spot, but my part covered the bald spot. At the time of surgery, my head was shaved about 1 1/2", just about a 1/2" above the hairline, from the center of my forehead to about the middle of my left ear. I wore a wide headband until the hair grew back.

Good luck to your daughter! Let's us know how she's feeling.

Joan
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Diagnosed stage 2b in July 2003 (2.3 cm, HER2+, ER-/PR-, 7+ nodes). Treated with mastectomy (with immediate DIEP flap reconstruction), AC + T/Herceptin (off label). Cancer advanced to lung in Jan. 2007 (1 cm nodule). Started Herceptin every 3 weeks. Lung wedge resection April 2007. Cancer recurred in lung April 2008. RFA of lung in August 2008. 2nd annual brain MRI in Oct. 2008 discovered 2.6 cm cystic tumor in left frontal lobe. Craniotomy Oct. 2008 (ER-/PR-/HER2-) followed by targeted radiation (IMRT). Coughing up blood Feb. 2009. Thoractomy July 2009 to cut out fungal ball of common soil fungus (aspergillus) that grew in the RFA cavity (most likely inhaled while gardening). No cancer, only fungus. Removal of tiny melanoma from upper left arm, plus sentinel lymph node biopsy in Feb. 2016. Guardant Health liquid biopsy in Feb. 2016 showed mutations in 4 subtypes of TP53. Repeat of Guardant Health biopsy in Jana. 2021 showed 3 TP53 mutations, BRCA1 mutation and CHEK2 mutation. Invitae genetic testing showed negative for all of these. Living with MBC since 2007. Stopped Herceptin Hylecta (injection) treatment in March 2020. Recent 2021 annual CT of chest, abdomen and pelvis and annual brain MRI showed NED. Praying for NED forever!!

Last edited by Joan M; 11-06-2011 at 10:00 AM..
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Old 11-09-2011, 10:27 AM   #3
Kavy
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Join Date: May 2006
Posts: 157
Re: craniotomy info please

Joyce,
Sorry I do not have any information about craniotomy, even though I almost had one 3 times this year, but I want to let you know I'm thinking about you and your daughter, and praying that the craniotomy was a sucess, and that she will have a quick recovery.
I hope she is doing well.
Hang in there.
A big hug for both of you, and lots of healing prayers.
KarlaV.
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Old 11-09-2011, 03:53 PM   #4
Barbara H.
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Re: craniotomy info please

I am here more than 7 years after my craniotomy. I also work full time and am currently NED on Tykerb and Herceptin. If you research my name on this site you will find my posts about my experiences. At the moment I just do not have time to rewrite the whole story.
Thinking of you and wishing you the best.
Barbara H.
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Old 11-25-2011, 02:04 AM   #5
Survivor2be
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Join Date: Nov 2011
Location: Arlington, TX
Posts: 11
Re: craniotomy info please

I just had my brain surgery on 11/17/11. I was in the neuro ICU for one night, then the oncology floor for 1 night and then went home. I walk every morning. I am on steroids ( but coming off them), anti-seizure med, pain meds ( take only occasionally) and vitamins. Recovery has been very easy!!! Some fatigue and difficulty with math. Have a hard time with frustrations (mainly to do with 3 kids!!) but I think that's more due to the steroids!!
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