Good Morning,
I am a Inflammatory Breast Cancer survivor of three years and recently received the results of CT Scan, 2 biopsies and a PET scan that followed a swollen lymph node that remained enlarged for two months following a sinus infection and two rounds of antibiotics. The left node is located on the left side of my neck by the ear and jaw bone. The first biopsy was inconclusive, second biopsy indicated "a well differentiated keratinizing squamous cell carcinoma is favored". PET scan states the following:
Asymmetric increased metabolic activity within the left palatine tonsil/glossotonsillar sulcus region...w/maximal SUV of 10. Increased metabolic activity associated with enlarged low density lymph node behind the left submandibular gland measuring 1.9 cm in diameter with maximal SUV of 7.2. Increased metabolic activity associated with enlarged lymph node within the left side of the neck deep to the anterior margin of upper part of the left sternocleidomastoid muscle where there is a 1.6 cm lymph node with maximal SUV of 7.7. IMPRESSION: increased metabolic activity in the left glossotonsillar sulcus/palatine tonsillar region with metastatic left cervical lymph nodes (level 2). No abnormal FDG in chest, abdomen, pelvis
I know this is cancer and I will be seeing my oncologist and the ENT early next week but could someone prepare me for what I MIGHT be told? I have read and read on the internet and I am so glad I found this forum. Thank you for any help or advice you can give me prior to my appointment.
Wendy in Florida
Hi there... Welcome and sorry you have to be here.
Likely they will want to remove your tonsil assuming the biopsy confirms cancer. Then they will want probably set you up for radiation 6-7 weeks daily weekends off - and possibly 3 or 6 rounds of chemo (during rads) this depends on the chemo - often it is cisplatin - this is only effective in conjunction with rads -the other options are carbo, or erbitux. Carbo is simply an older version of cisplatin. It's 3 large bags or 6 smaller weekly doses.
Radiation sucks but it's doable. Eat up now. It burns the crap out of you inside so eating gets hard and taste checks out around week 4 -the first few weeks are ok. The last 2 are not fun and the two weeks after suck. Then slowly you feel better.
You may need a peg (feeding tube) but do swallow during treatment even if it's just sips of warm water.
Mostly nutrition and hydration is important. You will get through this... You'll need a good cream for your neck. I own a waterpik - it's awesome and I bought it during treatment. You will have severe lack of saliva after treatment (this is after the really brutal thick mucous you have at the end of treatment.
Chemo for me wasn't too bad but it runs the gamut - for others. The best thing you can do is stay on top of your food and fluid, and up your protein to promote healing.
That was my crash course to you. Hugs.... Read up on the fall out. There are some horror stories but usually it's doable. Take care - oh and most importantly if you can seek out treatment at a top CCC and make sure your ENT is experienced at treating oral SCC.
Cheryld
Thank you for your response. I am being seen at the University of Pittsburgh Medical Center/Eye and Ear Institute. I'm sure I'll have more questions.
Thanks again.
Welcome wvs, and sorry you had to join this site. A PET scan alone can not diagnose cancer, but is a tool used in conjunction with others exams to help make a diagnosis, and only a biopsy can say wether it is cancer or not, which you had in the 2nd biopsy in the lymph node, probably level II, which showed SCC, which is cancer. Usually the cancer in the cervical lymph nodes is from elsewhere in the head and neck, and as shown by the PET is from the Tonsil, which is in the Oropharynx. This is 90% of the time HPV related, and they may have tested or should test the biopsy sample from the lymph node, which will have HPV DNA if positive. Being HPV positive in the Oropharynx usually has better prognostic rates across the board, and responds well to radiation, induction chemo, compared to being HPV negative, which is usually tobacco related, and more aggressive.
UPMC is a top hospital, a CCC, and top rated in ENT, and Cancer. Not sure of its ranking in U.S. Buisness Reports Best Hospitals 2013/14, but probably in the top 20 out of 5,000 hospitals, if you care to look.
They may want to a Endoscopy or Pandendoscopy to check the aerodigedtgestive tract, take a biopsy of the tonsil, and rest of oropharynx to see if cancer spread elsewhere. Sometimes not, and these days thier doing more tonsil robotic surgery, which has good outcome, maybe a neck dissection too, or just Chemoradiation, and then there is deescalation of treatment in some clinical trials, etc. There are different types of treatments options, and having many optionsare good, but basically it's surgery, radiation, Chemoradiation or a combination. You will probably have a combination of treatment modalities being its advanced cancer, usually most HPV is, and sounds like stage 4 with two lymph nodes involved. Chemo alone does not kill this cancer.
You will find out more after meeting with your doctors, and sometimes things move fast, and then sometimes it's hurry up and wait depending on thier schedules.
There are links here to treatments you can read up on, as well as the forum.
Good luck.
Welcome to OCF, Wendy. Im glad you have found our site. We will help you get thru whatever you are facing.
Best wishes with your upcoming appointments.
Hi, Wendy
The NCCN Guidelines for Treatment for professionals is available on the OCF Site on this page:
http://www.oralcancerfoundation.org/treatment/guidelines.phpIf you review this document for cancer of the oropharynx, you will see the standard treatment guidelines by stage. If possible, print this and take it with you - I think if makes it easier to understand your possible options than just a verbal description.
Although surgery sounds harder than chemo-radiation, don't rule out surgery with possibly reduced radiation if it is offered. Radiation has longer-lasting side effects than the fancy robotic surgery available now.
Best wishes and welcome.
Maria
Thanks for your replies. I'll keep everyone updated as the process begins.
Hi WVS,
Like others, I am very sorry to hear of your diagnosis. Yours sounds just like mine, and your primary tumor is probably in the base of your tongue.
Cisplatin (named because it is a platinum - a Heavy Metal - based agent, expect severe nausea (the severity comes from the fact that the radiation will also make you nauseated), complete loss of taste temporarily, and neuropathy in your extremities (finger tips and toes), as well as hearing loss.
IF your Medical Team does not raise these neuropathy issues; ASK them to explain why not. You must be your own advocate here, don't expect them to advocate for you.
And DO let then know the minute you thing you are experiencing either unexplained feelings in your extremities or hearing loss (or tinnitus.)
This will not go down as one of your most cherished memories, but on the other hand, it will not be as bad as I make it out to be. It will be bad, but is very doable. You will survive, and the effects will pass, leaving normalcy in it's aftermath.
Be vigilant to avoid getting in the self-pity trap as you wade through all the unpleasantness and you will be fine.
Good luck,
Bart