#41753 09-08-2007 06:42 PM | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) |  "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Jerry and Mike...You have swelled my head. Now I will be impossible to live with!
SUE!!!!! Welcome back to the forum. I know that we've emailed, but I can't tell you how happy it makes me to "hear" your voice on the forum also.
You have had a terrible time, but you have information and experiences now that will be very, very valuable to others....experience that I don't have.
You have had the exact experience that Katie has been asking about.
Welcome back. Share what you can when you feel like it.
XOXOXOXOXOXXO!!!!!!!!!
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
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#41754 09-09-2007 12:44 AM | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Sue,
It's great that you are back on the board. Your experience and now expertise on this subject will be helpful to many.
I will be emailing you later and hope that you are able to get the trach and tube out this week.
Feel better soon. Hope the swelling is down somewhat today.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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#41755 09-12-2007 07:44 AM | Joined: Sep 2007 Posts: 14 Member | | OP Member
Joined: Sep 2007 Posts: 14 | Dr Mike - thank you for your suggestion re: speaking to the doctors. After the first 24 hours following the operation the staff were very clear that they wanted me to stick to visiting times which I have done and consequently I have not seen a doctor for a week. I have remedied this today and am hoping for an appointment to see them tomorrow.
With regards to the prosthodontist, given in the UK that we have a national health service, you don't have a great deal of choice as to who carries out your care. I am nervous though, as it is obvious that their treatment of choice is a free flap, which must mean that their experience with obturators is limited. However all the posts have given me ideas for questions which I am preparing.
August thank you for the pictures, they weren't too scary, I can't look in my husbands mouth at the moment as they have packed it full of gauze and he can't yet open his mouth very far as it is only two weeks after surgery and he had a part of his top lip removed. I have found out that he has two back teeth remaining which is good.
Again thank you for all the replies and advice.
Katie
Husband dx'd 18/07/07...Maxillectomy, palatectomy, neck dissection 30/8/07....clear margins, nodes dx'd 12/9/07 in the middle of radiotherapy and struggling.
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#41756 09-12-2007 07:50 AM | Joined: Sep 2007 Posts: 14 Member | | OP Member
Joined: Sep 2007 Posts: 14 | Helen
Sorry missed your posting. yes he is in the Kinmonth Unit, the consultants I have dealt with so far have been Ok if a little evasive. I will report when I have managed to arrange a meeting.
Katie
Husband dx'd 18/07/07...Maxillectomy, palatectomy, neck dissection 30/8/07....clear margins, nodes dx'd 12/9/07 in the middle of radiotherapy and struggling.
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#41757 09-15-2007 09:40 AM | Joined: Sep 2007 Posts: 14 Member | | OP Member
Joined: Sep 2007 Posts: 14 | We had a meeting with the consultant yesterday who has made it clear now that there is no decision to make with regards to a free flap versus obturator. The histology results show that the cancer is particularly aggressive and therefore they are going to press ahead with radio therapy as soon as possible and this is the priority. As an aside it sounds like the system in the states for the making of obturators is very different to the uk. I met the person who is going to be doing this and he is a technician who makes many different types of protheses for the maxio-facial unit.
I think this ends this thread but I am so grateful for the input and support from members, I am sure I will be asking further questions.
Husband dx'd 18/07/07...Maxillectomy, palatectomy, neck dissection 30/8/07....clear margins, nodes dx'd 12/9/07 in the middle of radiotherapy and struggling.
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#41758 09-15-2007 11:12 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Katie
Yes well I'm sure that that sort of decision changes everything, and I'm sure that medically that is the way forward. Sometimes it is good when you don't have to make a decision yourself that you are really not sure about.
When will the radio therapy start? and for the moment is he staying in hospital?
Oh and are you looking after yourself? (it is just as important)
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#41759 09-16-2007 10:24 PM | Joined: Sep 2007 Posts: 14 Member | | OP Member
Joined: Sep 2007 Posts: 14 | Helen
Yes I am relieved not to make the decision but would rather it is not under these circumstances. My husband is about to be discharged from Kinmonth unit but may have to be an inpatient for the radio therapy. We don't know when this is going to start and are currently awaiting a visit from radiology. I am trying to look after myself but between hospital visits, ensuring my 14 year old is fed and OK and keeping the household running I am not sure what this will entail. I am also the main wage earner and I am worried as I am on sick leave at the moment but feel there is a limit to how long this can continue. One thing I have done is to contact coping with cancer who have been great and I am having counselling sessions from them. Sorry I bet you wished you hadn't asked.
Katie
Husband dx'd 18/07/07...Maxillectomy, palatectomy, neck dissection 30/8/07....clear margins, nodes dx'd 12/9/07 in the middle of radiotherapy and struggling.
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#41760 09-16-2007 11:45 PM | Joined: May 2007 Posts: 632 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2007 Posts: 632 | Katie,
Keep on posting your concerns, questions and anything else--everyone really does want to hear--so many have been there before you and are going through this at the same time as you
Brenda
Brenda in UK--Diagnosis 30/5/07--undifferentiated carcinoma in right jawbone and muscles. Stage 4
6/7/07--new diagnosis primary is in lung. Finished 4cycles of palliative carboplatin/gemcitabine
therapy September 07
Now dying to live!
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#41761 09-17-2007 11:17 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Katie
No problem, that's what we are here for. Hope the next lot of Docs are more forthcoming with information. (maybe you should start a list of questions now) Just a thought, could you ask to see a Macmillan nurse, there should be one in the hospital.
Remember to look after yourself, you are going to be the one holding all this together.
Sunshine.. love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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