#18440 08-14-2005 10:56 PM | Joined: Aug 2005 Posts: 17 Member | OP Member Joined: Aug 2005 Posts: 17 | I have just been diagnosed with tongue cancer. I am expecting surgery and radiation treatment in a few weeks. I am 34 and have a four year old daughter. This site has been a wealth of information for me as I have been told very little yet. Although the information is scary reading, it has been a great help to at least know what I can expect ahead. You all sound like lovely people and I wish you all the best. Thanks for sharing your stories, they have certainly helped put things in to perspective for me. Cheers all. Karyn
SCC left tongue Stage 2. 34 years old. Free flap and neck dissection 12/09/05
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#18441 08-15-2005 12:45 PM | Joined: Dec 2003 Posts: 528 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: Dec 2003 Posts: 528 | Dear Karyn
Welcome to the board. I am sorry you have to face such a difficult disease at such a young age and with a young family.
Like you, I found the OCF site helpful and informative, especially during the early days when I was making treatment decisions etc.
As far as coping with cancer is concerned, I found that acceptance was the key for me. I focussed on positive treatment rather than anger and denial. Laughter helped, as did being open with people - their support was wonderful. Cancer taught me it was OK to accept help - I was too independent previously.
Others here will have travelled on the journey you are beginning and will offer advice. We are all here for you and I send best wishes for successful treatment.
Love and light from Helen
RHTonsil SCC Stage IV tx completed May 03
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#18442 08-15-2005 01:24 PM | Joined: Jun 2002 Posts: 206 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Jun 2002 Posts: 206 | Welcome Karyn. How is it in New Zealand? I'm sorry about your cancer. If you have any questions feel free to ask. I'm 15 years out. I'll pray for you and wish you the best. Cathy
Cathy
SCCA Stage IV diagnosed 01/90 base of tongue with 1/2 removed. With neck resection, radiation and chemo
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#18443 08-15-2005 02:00 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Karyn, Welcome to the board. I'm really sorry you had to find us, but we will try to help as much as possible. Ask all the questions you want. Read as many previous posts as you can related to your particular cancer site and treatment options. We are here to support and help you get through your treatment and on with your life.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#18444 08-15-2005 04:26 PM | Joined: Aug 2005 Posts: 17 Member | OP Member Joined: Aug 2005 Posts: 17 | Hi Cathy, Helen and Eileen. Lovely to meet you and thanks for the welcome. I certainly am making the most of reading all previous posts...wow! I have had this horrible thing in my mouth for such a long time and finally when the right doctor has a look everything is done so quickly. And to be told so little apart from "it can be quite devastating"... New Zealand has very little information about oral cancer available....it is our Cancer Society donation collection day soon: "Daffodil Day" I will certainly be helping out with that if I can. You take care...Warm regards, Karyn
SCC left tongue Stage 2. 34 years old. Free flap and neck dissection 12/09/05
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#18445 08-15-2005 06:02 PM | Joined: Jan 2004 Posts: 316 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Jan 2004 Posts: 316 | Hi Karyn, I echo all the previous responses, especially Helen's ...I wasn't told very much in the beginning, and it wasn't till after my radical neck dissection that I found OCF. An absolute gold mine of information. I had radiotherapy at Royal North Shore Hospital in Sydney, and we had some Kiwi's being treated there also. Any questions, feel free...and "Daffodil Day" happens to be on my birthday this year...how ironic! Cheers! Tizz
End of Radiation - the "Ides of March" 2004 :-)
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#18446 08-15-2005 06:02 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Karen, I was 41 when I was diagnosed with jaw cancer and at the time my youngest was 9 and I also had two grandaughters ages 3 and 4. I have seven children so this really shook our family up alot. I wasn't given alot of information at first either and when I did start learning it scared me so badly. I'm sure you're feeling pretty scared right now but what you must do is make sure you are getting the proper treatment. That should be your main goal right now. Can you tell us more about your cancer, such as staging, etc? I had an enormous surgery removing half of my jaw and replacing it with a bone from my leg and then had 6 week of radiation. Two years later I am alive and well, cancer free, changed yet in my opinion a better person for it all. Cancer robs us but the experience of cancer gives many hidden gifts. I hope you have a good support system and that you can keep a positive attitude. Take care, Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#18447 08-15-2005 06:29 PM | Joined: Aug 2005 Posts: 17 Member | OP Member Joined: Aug 2005 Posts: 17 | Hi Minnie and Tizz...if only I knew a bit more I could tell you exactly where I am at. I was diagnosed in a small town (Whangarei) here in NZ, but everything has to be done in Auckland, so I was officially discharged from my local hospital last week. Went for CT scans and x rays last week as well. I havent seen the specialist yet - so I only have an outline of what to expect. So my short term goal at the moment is to ensure my little girl is cared for, she is lucky to have three parents , so I shouldnt have to much to worry about. All of you people certainly sound like you have been through the mill. I understand completely when you say you are a better person for it. I will be thinking of you on Daffodil day Tizz - I hope you have a blast. Hopefully I can let you know where I am soon..and it all isnt too much to take in. Thanks for your thoughts...Karyn
SCC left tongue Stage 2. 34 years old. Free flap and neck dissection 12/09/05
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#18448 08-15-2005 11:25 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello Karyn,
Welcome to the club nobody wamts to join!!! Don't let all the scary postings about treatment dominate your thoughts. Many of us have went thru similier trestment and have few side effects. I hhope this is true in your case. As you start your journey down this rocky road please know many of us have traveled it and survived. You can to!!! Did they tell you what your staging was? Hopefully they caught it in it's early stage. What type of surgery are they planning? Are you being treated at a majoe comprehensive cancer center? Have you got a second opinion? If not I would suggest you do. You want to throw everything at this the first time. It is a most unforgiving diaease.
Please keep us posted as you start your journey. We may be able to offer additional advice that will help you.
All My Best to you and your family.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#18449 08-16-2005 01:41 PM | Joined: Aug 2005 Posts: 17 Member | OP Member Joined: Aug 2005 Posts: 17 | Hi Danny Boy I am at stage II. I was really surprised when I was told they had caught it early as it has been giving me grief for over a year. I have had what I thought was an ulcer for over three years. I know very little yet but will be treated at the biggest hospital in New Zealand in Auckland city. I havent had a second opinion yet - but I suppose being referred now to a new hospital is just as good at this stage. The biggest thing for me is fear of the unknown so any information is great at this stage. I will keep you posted on what is happening...thanks for your thoughts Danny Boy - you take care. Karyn
SCC left tongue Stage 2. 34 years old. Free flap and neck dissection 12/09/05
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#18450 08-16-2005 02:25 PM | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Hi Karyn, Sites like this didn't exist when I and Brian and Cathy were diagnosed which is why Brian founded this wonderful site. Those times were really scary doing this alone. Hang in there and we all will try to help you get through treatment. Keep us posted and keep asking questions. Take a deep breath and as Danny says 'the road is rough', we'll try to get you down it.
Take care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
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#18451 08-16-2005 02:39 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Karyn, It helped us to have a notebook and a small calendar with us at all times once John was diagnosed. I wrote down every date for every scheduled test, etc. and kept a running list of questions to ask each Doc. we saw. Then I would get on this site at night and read and write down more questions. It helps alot to keep your mind focused on understanding the language of cancer treatment and being able to ask good questions. Best of luck as you get going. Amy
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
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#18452 08-16-2005 03:02 PM | Joined: Mar 2002 Posts: 4,912 Likes: 53 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 53 | Re the book for keeping track of things, there is a really good cancer organizer on Amazon that people really like...wasn't around when I went through all this and Ingrid also took copious notes. I highly recommend it. you can keep track of tons of things in it. Please, if you buy it there, use the OCF link on the message board page or the books page to go into Amazon...they give us 2.5% of all sales that come through our links and it dosen't cost you a cent more. http://www.oralcancerfoundation.org/products/books.htm First one on the list - the cancer patient's workbook. Having said that for those of you that buy anything on Amazon, please remember to put the page with our entry link to Amazon on your tool bar and go to them via it. They will then know that you came from us, and we'll get our small cut. Every cent helps!!
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#18453 08-17-2005 03:22 PM | Joined: Aug 2005 Posts: 17 Member | OP Member Joined: Aug 2005 Posts: 17 | Hi again, the notebook sounds great. I am in the process of ordering one now. I am scheduled for my first appointment next Friday the 26th August (Daffodil Day Cancer awareness here in NZ). I have finally been put in contact with another survivor here in NZ so I look forward to catching up with them. Thank you so much for all your advice and kind thoughts. I will keep you posted on progress and in the meantime I am getting everything organised with my family before I go for treatment. Take care...thinking of you all. Karyn
SCC left tongue Stage 2. 34 years old. Free flap and neck dissection 12/09/05
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