Gloria,
Thank you for responding to my post. I don't know yet what kind of chemo I will be getting. I have a appointment on the 16th with the chemo doctor and he will go over all that then I imagine. My surgeon said this tumor is on the back of my tongue, and the biopsy will tell if it is from the original or a whole different one. I am trying to stay positive but still having a hard time wrapping my head around another cancer only 5 months after my surgery. thank you so much for your words of encouragement.

Paul,
Your kind words mean so much to me, and I am holding out hope that this tumor will turn out to be benign when they do the biopsy. Thank goodness my surgeon gave me some pain meds, as this was the first weekend in a while I was actually able to have some relief from the constant pain. I actually feel quite normal today for the first time in over a month or so. If you have the time can you please tell me what to expect from the radiation and chemo? I am trying to prepare myself mentally.
Again, thank you for your kindness shown.


Christine,
I appreciate so much you always taking the time to respond to my post. Right now I am overwhelmed and just don't know what to expect for what lies ahead. If you could give me any info on what to expect on this journey, I would be very grateful.

Camille

Camille,

I'm sorry for your pain, which I didn't know you had, and may have been an indication something was out of the ordinary that may have prompted your care.

What type of biopsy do they plan on doing, extent of surgery, if it's a surgical biopsy as the back throat, oropharynx is difficult to get at with a fine needle biopsy?

Surgery is usually the preferred treatment for a recurrence, minus or plus radiation or chemoradiation, which surgery was not mentioned? Sometimes the location of tumor, tumor burden makes it inoperable, but still does not mean incurable. Sometimes they do induction chemo to shrink a tumor, and do surgery. There may be many options available, including clinical trials.

Radiation side effects can be acute, less than 3 months, and long term, lasting longer than 3 months, and vary based on the type of radiation, if used with chemoradition, the dosage with Grays, the frequency in fractions, prior radiation, prior surgery, age, health status and other cornorbities. Chemo basically can have the same side effects, but are usually acute.

I assume it's squamous cell carcinoma? Usually the preferred chemo is Cisplatin, but others are used if the patient can't have this due to hearing, kidney issues etc

There is plenty to go over, and don't want to bombard you with any listings, so here is treatment page from OCF, which you can review the different sections when you get a chance for an overview, and we can go over.

Besides myself, many here have plenty of experience, such as Christine, Gloria to name a few. As for myself, I had about 21 different type cancer treatments between surgery, chemo, radiation and others, so there's not much we can't help you with!

Christine has important information on nutrition and hydration that she usually provides.

Main OCF site, Treatments

Hi Paul,
I don't know if you have gone back and real my posts from the start ( which details my whole journey so far), but yes I was originally diagnosed with squamous cell carcinoma of the tongue. I don't know what kind of biopsy will be done on the 21st, as I was so overwhelmed that day, not sure what I heard.I know my surgeon said it will be done in the hospital as a outpatient procedure. This is also when the other surgeon will insert the port for the chemo and the PEG tube. I am really dreading the feeding tube and wondering if it is an absolute necessity that I have to have it. I really thought I had made it out of the dark place I was in after the surgery and neck dissection when I was told I didn't need any chemo or rads. I think that and the fact that it was all only 5 months ago, is what makes it so hard for me to wrap my head around. I appreciate very much you always taking the time to respond and answer my questions and thank you also for your kind thoughts and concern. Today has been a really difficult day. I work as a Para-Professional for a High School and only work 6.5 hours per day. I called our lady in charge of our insurance to inquire if I am eligible for FMLA only to be told I don't qualify because I have only worked 1170 hours in the last 12 months, and not the required 1250. ( have the summer months off.) She said I can take a leave of absence from my job, but if I do I lose my health insurance. Needless to say right now I feel like I just keep getting knocked down at every turn. Trying to stay positive, but if I have no insurance I know I can't afford the radiation. I could do the chemo if it's only 1 day a week and still continue to work the other 4 days of the week. Just don't know where to turn to right now.
Camille

Camille, Im sure you are not the first person in your location who has gone thru a serious medical issue. Try to think of others who have had major health problems over the past couple years and talk with them on how best to handle your HR. As a former union rep, our members were always told NOT to share their health conditions with the company (management), to keep it private to avoid bigger issues down the road.

Hope this helps you!!!

Hi Christine,
I am a little confused. Should I not have told my insurance rep my diagnosis and inquired about using FMLA if possible? I know I will have to be off work for 7 weeks, so knew I would have to let them know as I have exhausted all my sick leave from my previous tests and surgeries 5 months ago. I hope I haven't done something wrong.
Camille

Dont worry... you're ok!!! I suggested trying to think of others who had serious illnesses and talking with them about ideas to help get your absence ok'd. Im certain you arent the only one who went thru something where you needed long periods of time off. There's got to be others who went thru the same thing. If you are a union member, try talking with your union rep.

I was fortunate when I went thru OC for 3 consecutive years... I was eligible for FMLA and I had 3 months of fully paid sick time. Things have changed since that time and no longer would I have been able to take the time off I needed.

Hi Camille,

I just spent an hour writing a response and lost it because I let my iPad battery run out. Hope I remember what I was saying...

I read your posts and responses from the start. I understudied you're having a biopsy under anesthesia, probably an endoscopy, often an pandendoscopy or triple scope to check the upper aero digestive tract for any possible malignancies to be biopsied.

I liked the peg tube so much I had two lol. I didn't have my port or peg tube put in during the surgical biopsies, but on later dates. I had the 2nd one for 5 years, which I used intermittently during other treatments and surgeries. No, it may not be necessary, especially these days when they're pushing patients to maintain their swallowing during treatment, but your surgeons may feel your swallowing, weight, may be already compromised from surgery, pain, and soon Chemoradiation, that it may be necessary in your case. The problem with having one put in when needed during treatment is the risk of infection, which is not good, but they could put in a nasal tube, which is usually meant for use 6 weeks or less. Personally, I'd rather have a peg tube.

I'm sorry to hear about your work/insurance issue. It seems like you're 40 hours short in the past 12 months. I don't know when you're treatment is going to start, but sounds soon being your mask was made, and CT simulation is usually done at the same time, but my experience was it started about 2 weeks later after a treatment plan is made. Chemo can be started a few days after meeting the oncologist, having orientation, blood work, and sometimes that's started before radiation if there is a delay, and to sensitize the tumors for radiation. Some breeze through treatment, and continue working, and others may have a difficult time. It's all dependent on a number if factors, as each treatment is individualized, and toxicities may be depended in a number of other factors, including type, areas, dosage, frequency, etc. The effects of radiation are usually felt after the 2nd week or 10th day, but can be sooner. Chemo side effects may be felt 2-3 days after infusion, but depends on the type of chemo.

It sounds like the cat is out of the bag so to speak for your reason for FMLA. It's been a while for me, but you may not even need to give full details for the absence for a serious health condition. Is it possible to take sick days, vacation intermittent FMLA in hours, days, etc, which they may to accommodate you under ADA as long as its not an undue hardship for them, thus maintaining your insurance coverage or hold out as long as you can until you reach the 1250 hrs in a 12 month period, and hopefully they have 50 employees, in a 75 mile radius to be covered under FMLA, but your health is most important.

What about short term medical leave? Some places may still cover health insurance during that time. If you don't qualify for FMLA I think you may be eligible for COBRA. You would have to pay the full premium, plus an administrative fee. If you had dental while employed, you'll be entitled to dental too, as long as similar type employees still have it. I called the U.S. department of labor twice after I was employed, and they open a case number and try to rectify the situation. ACS, and other cancer hospitals may offer free legal advise.

Many hospitals and cancer centers, like non profit, offer medical assistance or grants. They may even help with Medicaid, SSDI or SSI during treatment and beyond.

A concern of mine is the distance you may need to travel for treatment? As mentioned, ACS have Hopes Lodges, which I've stayed at in NYC during one of me treatments for 6 weeks free! They were the best, and better than most hotels charging hundred of dollars a day. There is Harrah's Hope Lodge, possibly others, and ACS often gives vouchers to areas where there are no hope lodges. Many hospitals have their own housing or area hotel discounts.

I didn't see if you had dental clearance? This is a must! Any teeth that can be salvaged should, if not, extracted, to prevent any issues during treatment. If any are extracted, there should be a 3 week healing time, minimum 2, to helper bet Osteoradionecrosis in the future. I believe the dentist makes mouth guards to hemp prevent radiation scatter from any metal fillings to help reduce mococitis. They also make dental trays, so you can use with with prescription fluoride to help prevent Carries or at least paint the fluoride on. The radiologist may make a latex tongue depressor to help prevent swallowing during radiation, which I had none of these, and,had major complications later on.

I better post this before I lose it again.

I'm back lol.

Just a suggestion, is to start your own recordkeeping. I keep copies of all my bloodwork, tests reports, surgical reports, pathology reports and cd copies of scans for my records, and do come in handy with other doctors I visit. My other doctors often picked a concern that was not previously addressed.

Many hospitals have patient portals on apps or internet where you can get some reports, but not all, and it's a step in the right direction for patients. Quest Labs, where I have my blood work send to copies of the bloodwork to my app. I think most labs have to follow some extent of this law enacted several years ago for most states. Many did before, but NY was one of the last holdouts.

Knowledge is power, and enable you to better advocate for yourself

Paul,
Thank you so much for taking the time to respond to my questions and give me so much info. I am still just so overwhelmed by all this but trying to just keep putting one foot in front of the other and make it through another day. I have a appointment this Monday with the chemo doctor so imagine I will find out a lot more then. Some of this is so confusing, as last week when I saw the radiation oncologist and my husband inquired about would I need teeth removed prior to starting the radiation, he said no he wouldn't advise it, not at this time. He said down the road if the need arose, then we would cross that bridge. It seems like every doctor I talk to has a differing opinion, and I don't know what to do. Have a wonderful day, and again thank you so much for all your help and kindness.
Camille

Camille, if you are going to be doing rads and have any teeth that may need pulling, you may want to do it before doing rads. Doing so afterwards could create problems down the road with osteoradionecrosis. But theres also the healing time to consider. Normally rads begins at least 6 weeks after having teeth pulled. This could delay your treatments which could allow the tumor to grow for 6+ more weeks. Plus down the road you probably would need to do 20 hyperbaric oxygen treatments beofre the tooth extraction and 10 more afterwards (Marx Protocol). HBO is where the patient lays in a glass cylinder breathing pure pressurized oxygen.

If you are able to go to one of the countries top comprehensive cancer centers (CCC's) you would have a team based approach. This would eliminate all the different opinions and running around from one doc to the next. The CCC's team based approach mean all the professionals are working together as a team. They meet and discuss each case individually. Patients and their caregivers can sit in on the team meeting. CCC's have many benefits besides their tumor board meetings, they have been proven to give patients the best chance of beating their cancer. I think I gave you the link for CCC's a while back. Please consider going to one.