#26814 10-14-2004 01:40 PM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 76 | I got my results & was not surprised but quite ANGRY that my pathology from FNA on my Thyroid came back as Follicular Cancer...I am angry that I had to keep persuading different doctors all over the lower mainland that they should follow up on my complaints. They did NOT-I did & the results are not good from the biopsy.
I wonder what's in behind the thyroid gland? Any of you who have battled this or any new comers...please know that it should be treated aggressively the first go around so you don't have to go thru this again.
The good news is that I am so damned mad I told them to GET me to a major cancer center as I didn't want to take care of my own follow up after surgery again. So I have a team at a major cancer center when I am booked.
Good luck to us all. Me too!
Maria
01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
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#26815 10-14-2004 02:15 PM | Joined: Feb 2004 Posts: 261 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Feb 2004 Posts: 261 | Follicular cancer? As if we need different flavors of this damn thing! Am so sorry for the bad news. I'm cheering for you! I haven't got my results of cat scan yet, but it doesn't look good according to the radiologist. Biopsy next I guess. It ain't cancer till they say it is.
dx 2/11/04 scca bot T3 IU 2B MO poorly differentiated, margins ok, 3/16 modest, jaw split, over half of tongue removed, free flap from left forearm - finished chemo & rad treatment 5/20/04
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#26816 10-14-2004 03:01 PM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 76 | Erik...I had to laugh...flavors?!
I pray you hear the nay say on your results.
Guess I should change my dx info to what is known not what is not.
I do know I wish you well.
Thanks
Maria
01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
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#26817 10-14-2004 03:53 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 | Maria, My aunt was diagnosed a couple of weeks ago with follicular Non-Hodgkins Lymphoma. Assuming this is what they are talking about, I have had the pleasure of spending many hours finding things to read about it. Assuming this is the case, the good news is that this is one cancer that could be very slow growing and not very aggressive. I will continue with the discussion based on me believing it is fNHL as it is called. The first step that they do with the biopsy after confirmation is to grade it. They get count on a certain number of cells and based on how many small cells versus large cells, they assign a grade. This grade will tell you how agressive of the slow growing cancer yours is. They then do PET/Ct scans and an MRI with contrast to see how many areas are affected and based on several factors, they stage the cancer and come up with what is called a prognostic indicator. Factors in a person's favor are age under 60, affected lymph nodes all above the diaphragm and, not showing symptoms, bone marrow involvement plus some specific labs to determine levels of LDH and hemoglobin. Here are a couple of links with just about everything you ever wanted to know about fNHL. http://www.lymphomainfo.net/nhl/follicular.html http://www.lymphomation.org/ I hope I am not jumping the gun before you know if it is what I think you are saying. My aunt was told that even doing nothing would give her 7-10 years. Many people are living 30 years after the first round of treatment! There are some specific combinations of chemo that are used plus Rituxan called CHOP +R for Cyclophosphamide (Cytoxan
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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#26818 10-14-2004 05:57 PM | Joined: Mar 2004 Posts: 76 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Mar 2004 Posts: 76 | Ed,
Thanks for the links I will pursue them & other options-it isn't a lymphoma though-it is just cells behaving badly as it was with the SCC I had removed earlier this year, although,yes, (from everything I have learned)and what you have it is slow growing....yippee!
Maria
01/04 SCC of tongue base, T1N0M0
03/04 Partial glossectomy
04/04 Rad
12/04 Throidectomy(follicular cancer)
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#26819 10-14-2004 09:46 PM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Maria
Sorry that you are facing another fight girl, but this time the Docs had better watch out for you!! 'Forewarned is Forearmed' So give it your best shot girl
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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