Giant Cell Tumor Network
-
caroline
- Female
- isle of man
- United Kingdom
- Share
- Blog Posts (5)
- Discussions (34)
- Groups (1)
- Photos (1)
- Photo Albums
caroline's Discussions
post treatment scan
4 Replies
Started this discussion. Last reply by caroline Mar 31.
Radiotherapy
Started Oct. 31, 2008
giant cell tumour of the temporal bones base of skull
9 Replies
Started this discussion. Last reply by Quinton Aug. 1, 2008.
caroline's Page
Gifts Received
caroline has not received any gifts yet
Latest Activity
Profile Information
- About Me:
- i am 45 a practice nurse working 20 hours a week. i am married with 2 children 20 and 18 and a large and energetic chocolate labrador. i am very fit and active and compete in long distance walking events and do amateur dramatics/musical theatre . i refuse to be slowed down by this tumor.
- How do GCTs affect you?
- GCT patient
- Location of primary tumor:
- temporal bone of the skull base
- Date of diagnosis of primary tumor:
- february 2007
- Treatment of primary tumor:
- 7 hour skull operation in october 2008 thank goodness they saved my facial nerve and i can still smile .. yeh. just had 5 weeks of radiotherapy to tumour bed . lost a lot of hair and was very sick but got through it and now its just scan to scan and hope and pray. Left with deafness and awful constant tinnitus in my left ear so i am trying to learn to live with it and say pardon a lot !!
- Facility treated at for primary tumor:
- aintree university hospital liverpool england uk
- Would you recommend this facility and it's Doctors to another GCT patient?
- yes and no fab surgical team but very poor nursing care , I am a senior nurse so it saddened me to have such poor post operative care
- Recurrence? If so, where?
- just had a scan today no tumour re growth seen for rescan in 6 months
- Treatment of recurrence:
- see above
- Would you recommend this facility and it's Doctors to other GCT patients?
- yes but cos mine is in my skull he is a base of skull surgeon not ortho
- Metastasis? If so, where?
- none so far again fingers xd
- Current GCT Status:
- just had 2nd operation in october 2008 and post op radiotherapy now scan to scan
caroline's Photos
Caroline's Blog
post radiotherapy scan
Posted on October 2, 2009 at 2:29pm — 3 Comments
back to Work
Posted on March 5, 2009 at 10:15am — 1 Comment
cant belive how tired and ill i have been since my 2nd operation. I am usualy so positive and strong…
Posted on October 31, 2008 at 9:58am — 2 Comments
Homecoming
Posted on October 16, 2008 at 1:49pm — 2 Comments
surgery again
Posted on September 27, 2008 at 2:02pm — 2 Comments
© 2009 Created by Heather on Ning. Create a Ning Network!
Comment Wall (10 comments)
You need to be a member of GCT Connect to add comments!
Join this Ning Network
Tara. xx
Thankyou for your msg, only a few British sufferers eh? ooh well iv not been told much tbh and im still very much in the dark on this tumor,im from Northampton, i had my tumor removed last friday with it being scraped out and the cement procedure, so im sat with a huge sore scar and still unsure of whats going on. Iv been told its a aggressive GCT but they not sure if its malignant, iv had two biospys and both come back non diagnosis so got to wait for results from surgery, they did say that if it wasnt found when it was i would of lost my knee as it was eating away at all my tissue :( scary thought.
I had my surgery done in Rohs in Stanmore, brilliant team so am in good hands.
So how you feeling & please to meet you. x
I was wondering how your return to work and MRI went. Hope everything is going well.
I've been keeping up with your notes and was sorry to read what a hard time that you had after your latest surgery, but also really inspired by your amazing attitude. I hope that you and your family have wonderful holidays and a happy and HEALTHY new year:). Good luck with the radiotherapy, please keep us posted.
I'm sorry to reply so late, but I just saw your message.
Radiation was different, depending on the day. During the first week or two, I did not see any changes in my normal symptoms (I was already in pain from the tumor). However, after many three weeks I started having more pain. I also had burning at the radiation site. It was as if I had a sunburn. The cream called Eucerin was recommended. I'm not sure if you have that in the UK, but I'm sure there is something comparable. I also stopped getting my period, but that was because my tumor was on my sacrum(behind my uterus). Because my bowels and bladder were also hit, I had diahrrea and urinated frequently. The tissues were irritated as was the tumor, so it was harder to control my pain. HOWEVER--------the good news was that my tumor shrunk and died! My surgery was much more successful AND thank Heavens----I have no reccurrence! And I think that it's because of the radiation.
I was very lucky to have a great team performing the radiation. First, they tatooed the marks on me to guide their radiation settings. I was on steroids for the pain at the time, so I gained a lot of weight. The crew would readjust from time to time because of the weight gain. The tattoos were stretched out because of the skin stretching. I went five days a week for five weeks or so, and every Friday, they would take additional x-rays to be sure they were hitting the right marks.
I wish you all the best with your radiation. I do not think that you will find the pain that I endured because I had mine BEFORE the tumor was removed, and the tumor and surrounding tissues were irritated because of the radiation. But since you had your surgery already, your experience will probably be much less painful. Keep in touch, and best of luck! God bless!