#18844 10-17-2005 11:31 AM | Joined: Oct 2005 Posts: 15 Member | OP  Member
Joined: Oct 2005 Posts: 15 | Hello everyone, My name is Andy and I too am newly diagnosed with SCC. I went to the Dr with 1 enlarged lymph node, and instead of doing a biopsy, they removed it. Well, that came back positive with SCC and now later this week, they are going back in to do a tongue base and back of throat biopsy to try to find the primary. At the same time they are doing the biopsy, they are going to insert a peg tube before I start the chemo and radiation therapy they have for me. I am actually hoping that they can find a primary source somewhere. I have had both an MRI and Pet/CT scan, that the Dr said showed a small blip in the tongue base. Just turned 38 3 days ago, and have never smoked. Even the Dr's found that weird. | | |
#18845 10-17-2005 11:36 AM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Mar 2002 Posts: 1,140 Likes: 1 | Andy, it is good that you have found this place. There are people here who can answer from personal experience just about any question you will have. Do not overlook the main OCF site where there is truly a wealth of information. Some of the days ahead of you may be rough, but you will get through them just as we have. I wish you all good luck. | | |
#18846 10-17-2005 01:20 PM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | Hello Andy
Welcome to the forum.
I know this is a scarey time for you, we have been where you are. We can help with all the little things that the Doc`s just forget to tell you .
eg. bulk up now while you can eat, you will lose weight and you need any reserves you might have.
Make sure they use amifostine, it helps save the function in your salivary glands, a BIG quality of life issue.
As Joanna advised, spend time researching the site, the information you will find is invaluable.
We found our way here part way through the treatment and I really wish we had known then what we know now!
Post any questions you have Andy, someone here will have the answer you need.
I know there are a few postings of questions to ask your Doctor, very helpful.
Most important , take someone with you to all appointments , there is no way you can take everything in. I taped most of our Drs Appointments and was amazed when I played them back. I had forgotten so much that was said . Maybe that was just me!!
Let us know how you are doing, email if we can be of any help. As you can see we live in Atlanta, Lawrenceville actually.
Take Care
Marica
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#18847 10-17-2005 02:16 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | Andy,
Welcome to the neighborhood! I am sorry you had to find such a great place but also glad you have found one of the best sources of information as you are beginning this journey. The road will be bumpy but well traveled. Arm yourself with as much information as you can so you can do the best possible job guiding your way.
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#18848 10-17-2005 02:46 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 | Andy, to the above helpful advice, I would add the following: Get a calendar that you can carry with you, and enter on each day, who you saw, where you were,when you started a medication etc. This is especially helpful if you have to deal with an ins. co., plus down the road a bit, you may need to refer back to a date and you may not remember it. There will be lots of support here for you when you need it. 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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#18849 10-18-2005 09:44 AM | Joined: Oct 2005 Posts: 15 Member | | OP Member
Joined: Oct 2005 Posts: 15 | Thanks for all the support and information. I have spent hours over the pasy few days looking at all the info. Many thanks for all the help.
Andy | | |
#18850 10-18-2005 01:28 PM | Joined: Nov 2002 Posts: 274 Platinum Member (200+ posts) | | Platinum Member (200+ posts)
Joined: Nov 2002 Posts: 274 | Andy,
Make sure you ASK about amifostine, it may help save salivary gland function. Salivary gland function COULD be a post radiation quality of life issue. Keep in mind it is not always well tolerated. I believe 50% is the number that has been floated around by Brian.
Glenn | | |
#18851 10-18-2005 02:04 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello Elocia,
Welcome to The Oral Cancer Foundation!!! Glad you found us but sorry that you had to. I can't add much to what already has been posted. I can tell you the road ahead may be bumpy at times but you can beat this like many of us have. Remember to measure your progress in weeks not days.
Also ask your doctor what type of radiation and chemo drugs they are suggesting and why. The more info you have the better decisions you will make.
All My Best, 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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#18852 10-19-2005 06:36 AM | 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 Andy,
Welcome to the board, but sorry you need us. I had an unknown primary with mets to one lymph node in the neck. My RO said sometimes the primary shows up during radiation but mine never did. They didn't do a Pet scam, but not certain pet scans existed back in 1997. CT scans never found anything. Just wanted you to know that while rare, unknown primaries do exist. Keep us posted on what they find.
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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#18853 10-19-2005 11:59 AM | Joined: Oct 2005 Posts: 2 Member | | Member
Joined: Oct 2005 Posts: 2 | andy, hang in there. you will be amazes at how strong you are! there is treatment out there,and while some of it is awful, always remember that you will come out the other side of this-stronger, happier and more aware. i'll keep you in my thoughts. fivepets | | |
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