So I had the supracricoid laryngectomy late June and all margins were clear. The Ct scan showed No lymph nodes and cancer (rare spindle cell) was confined to larynx. I had surgery the 18th of September to inject radiesse gel into my vocal fold to help me with voice volume. It really did not work well. I had most post-op follow-up yesterday. The last week (out of nowhere) I developed a large lump just under my adams apple. In a week it grew from nothing to the size of a golf ball. I was going to the hospital anyway so I thought it may be an infection or air pocket from the surgery. Cancer cannot grow this quick I thought.
After checking out my vocal area which looked OK we addressed the lump on my neck. Ultrasound showed no air pocket or liquid like mass. Right there he did a needle biopsy and path came up and did slide samples. Within a half hour they confirmed spindle cell cancer in the tissue sample. I had a CT scan an hour later and should get results today and surgery scheduled for next Tuesday..neck dissection. Since I had radiation in 2011 which did not work I do not know if they will do it again or chemo. We are not that far along. It seems that the cancer is one step ahead of the surgeons knife.I will post back when I get CT results but what I hoped was confined to the larynx is NOT.. Steve Hurlock

So sorry to hear this news, Steve. I'm glad your doctors are on top of things though and it sounds like you will have a plan soon. Good luck with surgery next week! Wishing you the best possible outcome.

Oh my gosh Steve. Can only imagine how devastating this news is. Or maybe just amazingly frustrating and confusing. This crud does travel/grow fast.
Please keep in touch as things progress and know we are here for you. Sometimes I wish we could all be in the same place so we could group hug, cry, laugh and just "be" for each other. Thank goodness for this site!!
Kathy

Steve,

A number of us have had more than one trip down the radiation road. I had three and I know of two members here now undergoing a second and third treatment.

All three of us are doing Cyberknife. I had two IMRT and then a Cyberknife. One gent had one IMRT and is now doing a Cybeknife and the other had one IMRT and is on his second Cyberknife.

Just for you to know.

I will certainly explore cyberknife after the surgery. There is some thought that radiation that did not do the job the first go around maybe contributed to the cancer changing from Squamous cell to spindle cell cancer. It seems the spindle which is only found 1.3% head and neck cancer is more aggressive. I can't get a clear answer from my dr's. I don't think they know much about spindle cell. This lump (tumor) on my neck grew quick in a week. Thanks Steve Hurlock

Good luck with everything may they get it all this time and push for more rads if you can. Hugs! You'll get through this.

Steve

So sorry to hear this .it is not fair I know the pain of doing this dance the third time and it sucks. Your case is truly tragic since you never had a respite where you could dream you had beat it. Definely demand Cyberknife. I just finished my third round of radiation. First IMRT secon CYberknife third Cyberknife done this Thursday. The raw mouth sores and pain are a small price to pay for life. Nuke this cancer . We are all rooting for you
Charm

Hi Steve,

I am so sorry to hear about your reoccurence.

I am new here but I am experiencing a reoccurence with my father's BOT cancer so I thought I would share with you and get feedback as well. Nothing has been confirmed yet but a suspicious knot popped up on the crook of his arm near the armpit a couple weeks ago. Home health nurse contributed it to a strained muscle. Dr. looked at it yesterday and requested an ultrasound and it ruled out a knotted muscle. Confirmed as an enlarged lymph node. A needle biopsy is being done on Halloween to see if it is just infection or cancer has spread. His total gloss/laryn was done on Sept 4, 2012. His tumor was approaching softball size in his throat. He was diagnosed in 2009 and has never actually been "clean" for longer than 9-12 mo without a "hot spot" showing up on the PET. He is an alcoholic however, and I most definetly believe that where he refused to give up alcohol was the reason for all of his set backs.

I was curious if they would try to do radiation on him since the knot popped up in an area away from original site of tumor in his neck? I know he took max rad to his throat in 2009 when the tumor was diagnosed but being away from the site I was wondering if it would be treatable with rad/chemo again or do another surgery.

Hi ! they should be able to radiate a clean area the only concern there would be angling it to prevent hitting the lungs or avoiding them as much as possible. Also they can reradiate these days as well. Max is all fine and dandy but theres a sliding scale there and some people get way more than the max. Hoping very much this is just an infection. Take care.

Well I start November 12th radiation and Chemo. They are concerned even though margins we clean on neck tumor it still was in a lymph node and very aggressive. The area will be my neck for radiation. The first radiation I had was my larynx(bought me a year with out cancer) The proceedure is to kill any stray cancer cells.I am going to do TOMO radiation and 2-3 treatments of cisplatin. I will probably switch to the in treatment section of this site when I start the radiation 2nd time. I was going to roll the dice and not do anything but my family talked me into doing the follow-up.I know this will be tougher than first time with the addition of Cisplatin. Thanks for all support Steve Hurlock