Hi All - new here and almost afraid to start typing/posting because once I do I may never stop

My mother was diagnosed with SCC of the trachea/thyroid in late Nov. She had began having wheezing back in august, after a few tests and xrays they had determined it was beginning of emphysema with a referral to a pulmonologist. In early october I rushed her to the ER due to a severe burning in her throat with extreme breathing difficulty. After 5 hours a few tests some IV's and oxygen she was released, once again contributed to the lung disease. She was given a nebulizer, albuterol inhalers, nasal sprays etc..and another follow up with pulmonology. In early nov. she had a CT scan where it was determined some nodules could be seen in her neck area. A PET scan was scheduled for two weeks later (small town the mobile only stops by every few weeks). Breathing was becoming more and more difficult so I Took her to her gen dr to see if he could do anything else. By this time a small gumball sized lump had appeared in her neck at the site of her old trach scar (from oral cancer surgery in 99 - flap jaw neck extensive surgery) He immediately sent her to an ENT who did a needle biopsy and scope on nov 23. Surgery was set for Nov 24th for an additional biopsy and to open her airway. The cancer diagnosis was immediate. The following week she was seen by a thoracic surgeon who ordered a 3D CT scan to see about a surgical resection of the neck. The following week it was determined that surgery was not an option for her that the area was too large And we were referred to a cancer center. After a few introductory visits it was decided Erbitux and radiation would be the treatment plan (set to start next week) A feeding tube was recommended (the tumor is golf ball sized on the outer portion of the neck who knows what inside looks like) After a meeting with more doctors it was then determined her airway is too obstructed for the tube to be placed. We are getting a port put in tomorrow and they are going to try to feed by IV. In the 3 weeks since we met with oncology and radiation the tumor has doubled in size, growing blister looking bubbles that have burst and there's a constant drainage of blood/liquid. Shes also began coughing up large amounts of blood/clots. It's now tennis ball sized, almost purple in color with white spots in the center. I am an only child (as is she) I am also a widow/mother of 4, she lives alone and all care will be my responsibility. Has anyone else had an experience like this one? Where it grows so fast and opens like this?

As I said earlier we are no stranger to this battle. Besides the earlier bout of oral cancer she also had uterine cancer at 28 requiring a hysterectomy, breast cancer in her 40s with a mastectomy. She is now 61 years old and from what they say facing the most serious cancer yet. Any insight will be helpful, I've been lurking these boards for a week and am amazed at the people and support that can be found here, we're just getting started but I have a feeling I am going to be a regular!

Thanks
Kris

I"ll work on that signature thing when I get a few minutes and more information

Kris,

So when are they going to start TX? Oh I see next week. That thing is growing at a fast pace. I assume the tube they were talking about was a nasal tube since they said the passageway was already to narrow. What about a PEG tube directly into her stomach?

Kris, I am glad you spoke up about your mom. Why is it that it takes so long there to get anything going? I feel so bad for your mom and you. I can only imagine everything you posted and it works my imagination to death. You and she are in my prayers and have my best wishes for everything. Keep us posted please and with 4 kids. you have a rough road to travel. Jim

kris,
my heart goes out for u as i can see u have a very hard road ahead.
i dont have any experience with what u are describing but surely someone on this site can give u some input.
i will be praying for you and your mother. keep us posted.

Wow - can't tell you how great it feels to wake up in hell and not feel isolated, thank you for the responses! Would have responded last night but had a daughter fall on the ice (ahh the joys of living in the great north east!) which sent us to the pediatrician. After a quick exam doc says she doesn't think anything is broken..but it if makes her feel better will send for xrays. Had to hire a neighbor to take her to orthopaedic appointment today for the broken wrist, (mom has surgery) who says docs aren't ever wrong? lol

Saw Moms Oncologist yesterday for the pre-treatment visit (chemo starts on monday 1/11). The dr again mentioned a feeding tube (moms current weight is 85) we explained that on monday had seen a gastroentologist (sp?) and it had been determined that since the airway was obstructed it wasn't an option. So she called over to see about a tube straight into the stomach. Not sure what the response on the phone was but after an "Oh, ok then how about a double port" (1 for feedings 1 for chemo) we were informed that would be the way to go. (surgery is set for today) 10 minutes later another call comes in at the office to say there are no double ports available. So a single is what we'll be getting and they'll be doing chemo thru IV. That should be interesting since the radical mastectomy was on the left side leaving that arm weak and the flap surgery was done on her right forearm!
They also warned her yesterday that her airway is so minimal/compromised she runs a real good risk of asphyxiating on her own blood. She will be hospitalized for the first week of radiation (set to start 1/18) as they expect there to be swelling that will cut off airflow and living a half hour away wouldn't be enough time to save her life.
As far as I can tell all the delays have to do with the fact that she was unfortunate enough to be diagnosed around the holidays, for the past two weeks they didn't work on thursdays or fridays and require a chemo class before treatment begins (which is given on fridays). Makes no sense to me.. she's had chemo before I think she knows what to expect but I guess rules are rules huh?
On the bright side at least I learned a bit more info for my signature - T4, very very advanced (two verys'.. docs words not mine) and that it's localized. Wonder if that rosetta stone language program has cancer terms as an option because some days I swear it's like learning a whole other language!

Kris

Kris,

See below, I hope this helps.

Acronyms:
BaCC = Basil Cell Carcinoma
Biopsy = tissue sample removed for microscopic examination
BOT = Base of tongue
Brachytherapy = Radiation therapy with internal radioactive �seeds�
CAT = Computed Axial Tomography (scan)
CCC = Cancer Care Center
CT = Computed (computer) Tomography (scan)
Dives = treatments in a HBO unit
DX = Diagnosis
ENT = Ear Nose and Throat Doctor and surgeon
FNA = Fine Needle Aspiration � (Needle Biopsy)
HBO(T) = Hyperbaric Oxygen Treatments
HIPAA = Health Insurance Portability and Accountability Act
HN = Head and neck
HNC = Head and Neck Cancer
HPV = Human Papilloma Virus
IMRT = Intensity Modulated Radiation Therapy
Met(s) = Metastasis or cancer spread
MRI = Magnetic Resonance Imaging (scan)
NCCN = National Comprehensive Cancer Network
PCP = Primary Care Physician
PEG = Percutaneous Endoscopic Gastronomy (G tube or tube) Feeding
PET = Positron Emission Tomography (scan)
PT = Physical Therapist
QOL = Quality Of Life
RND = Radical Neck Dissection (sometimes Resection) also Modified
RO = Radiation Oncologist
RT = Radiation Therapy also Radiotherapy (Radio)
RX = Prescription or treatment
SCC(a) = Squamous Cell Carcinoma also SqCCA and sq cell ca
TX = Treatment
Xerostomia = low saliva
XRT = X ray Radiation Therapy

You should also go to the New Posters Forum and browse thru that.