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extracapsular spread

akotke's picture
akotke
Posts: 37
Joined: Mar 2011

My name is Angel and I have been diagnosed with stage 4b tonsil cancer. I had a neck dissection where my ent found 4 lymph nodes positive for cancer and extracapsular spread in the fatty tissue in my neck. He said my chances for a cure are at least 50/50. When I saw my oncologist, who had initially told me 50/50, but then bumped it up to 90 percent after my response to my first induction chemo, she said that my chances had gone down since then and though she wouldn't give me a number, said I had a good chance of beating this. On the other hand, my radiation oncologist, doesn't seem one bit phased by the extracapsular spread and told me my cure chances were at 80 percent. I asked him if he was in my shoes would he be making plans 5 years from now and he said heck yeah. I really confused because they are suppose to be my team and they don't seem to be on the same page. I start radiation and chemo on Monday. Does anyone have any experience with extracapsular spread?

liveagain
Posts: 15
Joined: Jun 2010

Hi Angel, I had 35 nodes positive with extracapsular spread on most nodes. I was told that it is not good but with radiation and chemotherapy my chances could improve. I am a 2 year survivor (1,5 year NED) with my 6 month scans coming up at the end of the week. Wish you well, I would believe the radiation oncologist.

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi Angel,

Welcome to the board. It's good that you found us and unfortunate how. I don't have any experience with extracapsular spread but lots with metastases and plenty with percentages. They're applicable for large control groups and not so much for individuals. I stopped asking or paying attention to them pretty early on in all of this and decided to be a miracle; and to work my butt off kicking cancer's ass. There's much hard work to be done outside of the treatment center that WILL increase your length of life regardless of your kind or stage. The docs generally take care of the easy things like tumors and meds and such. Welcome again. Lots of experience and strength here.

Bob

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hi Angel, Bob stole my response. I have had the same experience with my team. They don't seem to be talking with each other some times. I had chemo and radiation, followed by partial dissection. The percentages are more useful for doctors and researchers who use them to try and determine which treatment programs might be most effective. Only one of my doctors has even given me a percentage. Just take care of yourself and make sure your doctors get on the same page for treatment. A personal note. Pay attention to your hearing during chemo, especially if you are given Cisplatin. If you have ringing in your ears, hearing loss, let them know as the mixture of chemicals can be changed to help prevent hearing problems later.

best, Hal

luv2cut1's picture
luv2cut1
Posts: 285
Joined: Oct 2010

Had 4 nodes with extracapsular spread. This was after modal involvement was missed during diagnosis and first treatment for supraglottic cancer. At biopsy we were told by surgeon less than 25%. After surgery he upped the odds but didn't say by how much. At one point radiation oncologist said 85-90%. Medical oncologist is only "cautiously optimistic". So we are on same boat as you. Husband had
d radical neck dissection followed by chemo reirradiation. He is 18 mos out and doing well. Believe the best. It can be beat.

Myka

RushFan's picture
RushFan
Posts: 217
Joined: Aug 2010

I had one node with extracapsular spread...which was removed prior to treatment, which is not normal protocol at MD Anderson I was told. Normally they treat and then remove if necessary. My node was removed by my ENT to I.D. the cancer as the pathologist couldn't determine type by fine needle biopsy. Mayo identified the cancer as SCC. I was then referred to MDA.

MD Anderson staged me: Stage IV SCC unknown primary HPV+ T0,N2b

Since my doctors knew about the spread, I was given the option to add chemo to "enhance" the radiation. I opted in. Cisplatin, once weekly for seven weeks.

My doctors (surgical onc, chemo onc and rad onc) all said the same thing: "your odds of beating this are 90% given your age and overall good health, support and attitude. They then added chemo takes it up even higher...up to 95% or so.

All the best to everyone here,
Chuck.

akotke's picture
akotke
Posts: 37
Joined: Mar 2011

I sure appreciate the responses. I am 36 and I have a 12 year old son and an 8 month old baby girl. I guess I just needed to know that I have a chance of raising my children. It hasn't been easy since diagnosis. That is my biggest fear, that I won't watch my kids grow up.

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

what that cap-spread exactly means, but I had two lymph tumors with NPC. Neither was removed, but the upper was larger and got the biopsy. Both, and more, was eliminated by C&R, only. My ENT mentioned the 95% chance, and I'm now up to 27-months.

kcass

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