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Too many opinions! #36756
08-04-2003 02:54 PM
08-04-2003 02:54 PM
Joined: Jul 2003
Posts: 6
Missouri
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Debbie in MO Offline OP
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Debbie in MO  Offline OP
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Joined: Jul 2003
Posts: 6
Missouri
I am fairly new here and diagnosed in the past month with base of tongue cancer. There does not appear to be any mets and I have been staged as a T1. I have had 3 consults with 3 different opinions. The first ENT wants to do a radical neck dissection to remove the CA and probably followed by chemo and radiation. The radiation oncologist wants to do 7 weeks of radiation and does not think surgery is necessary. The ENT oncologist wants to remove the cancer on my tongue with laser surgery and do a neck dissection to remove the lymph nodes. He does not think radiation or chemo is necessary unless cancer shows up in the nodes. How in the world do I know which is the "right" option???

Debbie
Base of tongue cancer Stage 1


Debbie
SCC base of tongue Stage 1
Surgery set for 8/11/03
Re: Too many opinions! #36757
08-04-2003 04:09 PM
08-04-2003 04:09 PM
Joined: Jul 2003
Posts: 9
NYC
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scribe Offline
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Joined: Jul 2003
Posts: 9
NYC
Hi Debbie

I just went through the same ordeal. In described situation I would choose the third option.
I encourage you to do more research, listen to all the opinions and make your own.
Les

Re: Too many opinions! #36758
08-04-2003 05:21 PM
08-04-2003 05:21 PM
Joined: Nov 2002
Posts: 3,552
San Francisco CA
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Gary Offline
Patient Advocate (old timer, 2000 posts)
Gary  Offline
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Joined: Nov 2002
Posts: 3,552
San Francisco CA
Hi Debbie,
I am not a doctor and had a different cancer but my understanding is that tongue cancers have the potential of being more invasive and agressive than other forms of throat cancer, hence the fairly agressive treatments proposed by your three doctors, even though you have a stage I. This is not about the easy way out. It's about the route most likely to save your life and prevent recurrance.

If you have the opportunity or resources to have a second opinion at a NCCN facility, I would go for it. Go to http://www.nccn.org/ for the closest location.

Every decision that I made was arrived at with much research and questions and my wife was there taking notes and asking questions also, since I was half out of my mind with the stuff and many things blew right past except for her notes. I will pray for wisdom both for your doctors and yourself to follow the best path.


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Re: Too many opinions! #36759
08-05-2003 12:57 AM
08-05-2003 12:57 AM

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Anonymous
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Hi Debbie,

This is a confusing and very scary time for you. To say the least. I have to agree with Gary, and if you can find a multi discipline hospital then you can have a tumor board review your case - instead of just different doctors not talking to each other. You can also use the search and site map on the main body of this site and find more information than probably any place else on the net.

We aren't doctors, just a group that has been there and will be here for you if you need us.

Keep us posted.
Dinah

Re: Too many opinions! #36760
08-05-2003 01:14 AM
08-05-2003 01:14 AM
Joined: Mar 2002
Posts: 234
Wilmington, Delaware
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youngerag Offline
Platinum Member (200+ posts)
youngerag  Offline
Platinum Member (200+ posts)
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Joined: Mar 2002
Posts: 234
Wilmington, Delaware
Debbie,

Not sure if this will help either, but I was diagnosed with SCC stage II - III three years ago on my tongue and the floor of my mouth. All cancer was removed via surgery with clean margins. I had all lymph nodes removed at the same time by a modified neck dissection. Both sides were done as cancer on the tongue was on one side and the floor of the mouth was the other. All of the nodes were clear, consequently, I did not have RAD or Chemo.

Three years later, I'm alive and kicking and still cancer free. I did however, go to two different doctors for check ups monthly, then bi-monthly, then quarterly and now it is every six months.

Take care.

Anne.


Anne G.Younger
Life has never been better.
Re: Too many opinions! #36761
08-05-2003 01:15 AM
08-05-2003 01:15 AM
Joined: Jul 2003
Posts: 40
Massachusetts
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Flo Offline
Contributing Member (25+ posts)
Flo  Offline
Contributing Member (25+ posts)
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Joined: Jul 2003
Posts: 40
Massachusetts
Hi Debbie,

Welcome, you came to the right place for advice! Be strong and focus on your research. My advice would be that you are searching out Head and Neck Cancer Specialists for opinions that have seen this type of cancer day in and day out. I wish you the best and I'm sure that you will make the right decision. Remember, whatever YOU decide will be the right decision. My prayers are with you. Take Care. XoX "Never give up, this may be your moment for a miracle" Flo wink


Caregiver for my loving Sister Linda 37, Advanced Recurrence SCC of the Head and Neck. 2003
Diag. June 2000 with Tongue Cancer in Stage 3/Treatment RAD
Re: Too many opinions! #36762
08-05-2003 10:34 AM
08-05-2003 10:34 AM
Joined: Apr 2003
Posts: 148
Apopka, Fl
L
Lisa in Florida Offline
Gold Member (100+ posts)
Lisa in Florida  Offline
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Joined: Apr 2003
Posts: 148
Apopka, Fl
Debbie,

My doctor is also an ENT oncologist and presented me with the same plan of care. After laser surgery, he grafted under my tongue with a synthetic material so I wouldn't lose mobility. Radiation depended on the outcome of the biopsy of lymph nodes, all 22 came out clean so no radiation needed.


Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
Re: Too many opinions! #36763
08-05-2003 10:52 AM
08-05-2003 10:52 AM
Joined: Jul 2003
Posts: 6
Missouri
D
Debbie in MO Offline OP
Member
Debbie in MO  Offline OP
Member
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Joined: Jul 2003
Posts: 6
Missouri
Thanks guys for all your thoughts and suggestions. I have been researching but am having trouble finding any info on the laser surgery. I think Brian posted a few weeks ago that he did not think laser was effective. Brian..... was that you? Do you have research data? I would love to see it. smile

My 3 docs got together today and all conceded to the KC ENT oncologist that surgical removal (laser) of the SCC on the base of the tongue and removal of the lymph nodes on the right was the way to go. They all feel that this was caught in the very early stages and it is only superficial. I hope they are right!

I know this is MD Anderson's protocol per their website, but they do not mention the type of surgery or anything about laser. Has anyone here had the laser surgery?

Thanks for your help!

Debbie
SCC base of tongue Stage 1


Debbie
SCC base of tongue Stage 1
Surgery set for 8/11/03
Re: Too many opinions! #36764
08-05-2003 10:56 AM
08-05-2003 10:56 AM
Joined: Jul 2003
Posts: 6
Missouri
D
Debbie in MO Offline OP
Member
Debbie in MO  Offline OP
Member
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Joined: Jul 2003
Posts: 6
Missouri
Thanks Lisa.... I just saw your post. It sounds like exactly what my ENT wants to do. How are you doing since your surgery? Do you have any loss of function? Where are you from, maybe we have the same docs.

Congrats on being node free! I am praying that is my case too. smile

Debbie
SCC base of tongue Stage 1


Debbie
SCC base of tongue Stage 1
Surgery set for 8/11/03
Re: Too many opinions! #36765
08-05-2003 11:21 AM
08-05-2003 11:21 AM
Joined: Apr 2003
Posts: 148
Apopka, Fl
L
Lisa in Florida Offline
Gold Member (100+ posts)
Lisa in Florida  Offline
Gold Member (100+ posts)
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Joined: Apr 2003
Posts: 148
Apopka, Fl
Hey Debbie

I have replied via email regarding my doctor. I am doing really well, feel like Pollyanna sometimes!


Lisa
SCC of Tongue Stage 1 (T1,N0,M0)
partial glossectomy,modified neck dissection 4/14/03
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