| Joined: Jun 2010 Posts: 38 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2010 Posts: 38 | Just had my second PET in 6 months since treatment ended in February. They are watching a 1 cm low left axia lymph node. It has not changed since but SUV is up to 5.4 from 2 last time.
The Oncologist, Radiologist and Surgeon all concur that it is needle biopsy time. I have not had good results with prior FNA as they never showed positive till much later when conditions were much worse. If it is negative , they will just continue to watch again for another 3 months and I am not comfortable with this.
I have been battling since 2008 and I am running out of treatment options. I have had 3 types of chemotherapy, 3 neck dissections, 3 radiations to both sides of my neck and Brachytherapy to my tongue.
The latest shows everything is fine except for this arm node.
I guess I am asking what others have done. My research on here indicated almost all others who have had a node there turned out to be positive, but there wasn't much posted in the way of treatment and outcomes.
I am concerned with a few things: First, needle tracking if the node is encapsulated at this time. Also, since the node has not grown, but SUV increased do I act immediately?
I was considering asking them to remove it immediately but I understand they will remove several nodes and I run the risk of lymphodema in my left arm of which I am left hand dominant. Experience tells me there would be follow up radiation, chemo, or both.
I guess it is time to realize this is no longer curable for me.
I know I am putting the cart before the horse here, but I am trying to prepare a game plan of options for the future.
You see, I just returned to work a month ago after being off for 8 months from my last treatment and I know they won't hold my job any longer if I go out again which equates to no more insurance. And, I also have a wonderful fianc� who just asked me to marry him no matter what. His health insurance would put us financially ruined and I still owe thousands, even with prior insurance. Medicare will take 2 years. I still owe thousands even with hospital reductions.
We began to make wedding plans and plans for the future. I have a second hand dress and a date of June 21, 2014. I continue to try and be positive, but this is just too unfair.....
Thank you for any advice and suggestions.
BTW, I had the total laryngectomy last November. I am having trouble updating my signature
'08 SCC Rt tongue,part glossect. '09 Rt neck dissect, 3 Cisplatin, 35 rad. Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue. Oct '12 SCC prev stoma site. SCC inside trachea. Nov '12 total larengectomy, addl neck disect, pec flap Oct '15 Myelodysplastic Syndrome (form of leukemia)
Dec 8, 2015 passed away peacefully at home surrounded by loved ones How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness." | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Hi Cindy! Your post didn't post, just the title, and seems others, including myself had a problem with this. There is a post about it, but didn't read it lol. I hope all is well, and see its about an armpit lymph. I hope it's nothing.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
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