#20472 05-20-2006 09:43 AM | Joined: May 2006 Posts: 1 Member | OP  Member
Joined: May 2006 Posts: 1 | Hi, My name is Lynn and this is my first visit. My husband was just diagnosed this past week with Squamous Cell Carcinoma of Base of Tongue Stage 4. I am the type of person that believes in research, obtaining information, and learning all I can about anything I am facing, while he prefers to just not read anything that might put him in a negative frame of mind, thus, I am here as a support person. I hope that's okay.  I look forward to meeting people both living with cancer themselves, and those supporting loved ones living with cancer. Thank you! Lynn
Blessings,
Lynn
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#20473 05-20-2006 11:58 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi Lynn
I realise you are on a difficult journey. My first advice is to use the search and find what you you need, but I think it may be easier for you just to ask the questions as they arise. Someone will have been there before you, and you will get some good advice here.
Don't think your questions are unimportant, they are not, they are what we have all asked.
Stay with us...
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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#20474 05-20-2006 03:45 PM | Joined: Mar 2002 Posts: 4,918 Likes: 64 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 64 | Please take a look at the thousand plus pages of information on the main site. It will give you the basis to ask good questions here and of your treatment team. When you post next, please tell us about the treatment plan for your husband and where he is being treated. And of course, we all wish him and you a successful trip through treatments and a return to a normal life.
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.
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#20475 05-22-2006 09:48 AM | Joined: Mar 2006 Posts: 27 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Mar 2006 Posts: 27 | Hi Lynn
I am sorry to hear about your husband.
You did the right thing by posting here. I am sure you will find lot of useful info on this web site. My brother diagnosed with SCC on his tongue and this site is helping me a lot. You can find so many great pepole who has excellent knowledge about SCC here. I am pretty sure, no one will give you negative responses here.
All the best,
Praveen | | |
#20476 05-22-2006 12:35 PM | Joined: May 2006 Posts: 9 Member | | Member
Joined: May 2006 Posts: 9 | Lynn,
My husband too was just diagnosed. Our heads are spinning with all of the information. We're only a month into it, and he's just about to start treatment.
Just from my little experience, you need to research, get second opinions and ask questions. Don't be afraid to pin the physicians down for answers. As we found out through this site, you only have one shot at this, so you need to take the time to get the information and make the choices. Hang in there.
Husband Dx 4/06, Stg IVa, T1N2aM0, primary lft tonsil, treatments to begin 5/28/06.
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#20477 05-23-2006 05:40 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 | Hi Lynn,
Sorry to hear about your husband. I am a bit ahead of your husband on this rough road but it sounds pretty similar to what I started with. As others have suggested, spend the time to look over the main portion of the website and you will find answers to most of your questions. Information gives you the power and authority to direct treatment; what you do with that and how it affects your attitude is a choice.
You are in what I believe is the toughest role of all. You will be required to dig deep into yourself and pull out miracles by the hour at times. Unless you take the time to find some time and support for you, you will have the most difficult journey.
Hang in there and learn all you can.
Blessings and best wishes to you and your family.
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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#20478 05-24-2006 12:13 AM | Joined: Jan 2006 Posts: 32 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2006 Posts: 32 | Welcome Lynn,
we are a wee bit further down the track. My husband was dx in January with SCC (squamous cell carcinoma) of BOT (Base of tongue). We are both the type of people reading, researching and collecting all the info we can. I think we feel we have a better understanding and to a certain extend a bit of control over what is going on.
I can understand that this approach can be de-stabilising for some of us. Like other people, my best advice in terms of treatment for your husband is to seek 2nd opinion, ask questions, be prepare when you go to the doctor and take notes. Sometimes the information is so overwhelming (not only in its vocabulary but in terms of quantity) that you leave the doctor's office with your head full of confusion and more questions. During some visits I have found myself leading the session as David (my husband) was forgetting what to ask or even not reporting some things that had happen during the week. This is not in his nature!!
The treatment is no walk-in-the-park and you and your husband will go through a roller-coaster of emotions. Our oncology nurse suggested to try to live each step one at a time and try not to look at the big picture as it becomes rapidly too overwhelming. There is a lot of wisdom in this advice.
I send you and your hubby lots of positive energy from down-under!!
Wife of David, 44yo, SCC-BOT-R) mod. rad. ND in Jan 06. 35x standard RT from Feb-April 06. Recur on L) side same level in Sept 06 with mod rad ND. 1/48 node positive SCC + 1/48 positive micropapillary carcioma consistant with thyroid CA.
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#20479 05-24-2006 03:11 AM | Joined: Jan 2006 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jan 2006 Posts: 42 | HELLO LYNN, I HAD MY TONGUE CANCER BACK IN 1990
THAT WAS 15 YEARS AGO AND IT WAS A LONG ROAD. PLEASE READ AND ASK ANY QUESTIONS OF US THAT YOU
HAVE? I WAS IN MY 30'S BACK THEN AND NOW IN MY
50'S. I'M GLAD THAT I WENT THROUGH EVERYTHING AND
WOULD DO AGAIN. HOPE TO HEAR FROM YOU?
CATHY
Cathy
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#20480 05-24-2006 02:48 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 | Lynn, Hope you have time to read the "Just Diagnosed" work in progress on the forum. It will give you impetus in the right direction for what you'll need to be looking for. Hang in with us. 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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#20481 06-14-2006 03:04 PM | Joined: Jun 2006 Posts: 2 Member | | Member
Joined: Jun 2006 Posts: 2 | Hi Lynn,
I am new to this site as well, but my partner and I are now 15 mths down the track from diagnosis and he is doing really well. James was 32, non-smoker and diagnosed with stage 3/4 SCC of the tongue with 2 lymph nodes involved. They removed half of his tongue and performed a radical neck dissection. He then underwent 6 weeks of radiation combined with chemotherapy (cisplatin). This is a rather new approach here in Australia! His doctors only recommended radiation as the treatment is quite tough in itself and they did not believe it would be of any help, however on second opinion and after a lot of research we decided to go with the combined treatment option...I am very pleased we did, as we all know you do only have one shot at it!
One of the things we did during this time was take a tape recorder to our Drs appointments because everything went over our head at the time. James did not listen to the tapes, however I did and it was helpful as I was then able to reassure him on points that he was not clear on. I also found it important to act as the advocate for James as he was in so much shock and was reluctant to ask questions and push for information, which at times you do need to do.
Some other things that James found helpful to relieve the pain of treatment were aloe vera juice and pure aloe vera from the plant to put on the area affected by radiation. This helps relieve the dryness and irritation of the skin while not interfering with the radiation treatment.
So you are doing the right thing...I really wish I had found this site back then as it would have been a great help. Make sure you get lots of support for you as it is a tough road. Some of the best advice I was given was "Just take it one day at a time and remember to be kind to yourself"... It sounds simple but it really does help.
Thinking of you and sending you both strength, courage and positive thoughts.
Love and best wishes
Kris
Kris, Partner of James, 34 - diagnosed 18 March 05 with SSC of tongue stage III/IV,2 lymph nodes involved. neck dissection and hemiglossectomy, radiation combined with chemotherapy.
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