I am back - Oral Cancer Support - Survivor / Patient Forum

Seems like you all gave good advice but that didn't help my surgeons to change their minds about doing a needle biopsy in March when I asked about one. I am not very happy to say that its now September & the news I get to give my family is that the two ultrasounds I DID get show a tumor that has grown to almost double in size in my thyroid gland. My Dr said it is like being hit by lightning twice so they never expected to find anything so NOW I am getting the needle biopsy. I understand that the SCC of the tongue I had removed in March is not connected to my thyroid so hopefully it isnt even cancerous. Does anyone ever stop worrying once they have had cancer of any form? I do hope so. My thyroid gland showed a small 1cm mass in the right lobe in May when they did the Rad.scan and an ultrasound showed it clearer, we waited to see if the rad would shrink it as it was so small it is now almost doubled in size & NOW warrants a biopsy...4 mos later. Am I crazy to worry? Has anyone heard of the thyroid connection to oral cancer? I'd love if we all could carry on without worries, your folks & mine!

tiamaria, Welcome back to the site. Sorry you had to revisit us, hopefully we can provide some answers. Most of the real pros with this disease are in Vegas at the first annual gathering of OCF members, so you may not hear from someone who can respond with good, in-depth information for you regarding thyroid issues. Sorry I can't help with that. I do know that SCC has a nasty habit of metastasizing (sp) to other parts of the body. Mine went from my tonsil to the lymph nodes before it was even detected, so it is possible yours traveled as well. Hopefully someone can give you a more definite answer.

To be honest with you, I don't worry very much about cancer coming back, if it does then I'll deal with it at that time. Worrying isn't going to affect whether it comes back or not so why worry? As a Christian, I leave it in God's hands and do what I have to do with the tools He gave me. If He calls me home, I know it will be better than this life, so I am in a no lose situation. And there isn't anything to worry about. So my suggestion is don't worry about it, just do what you have to do to treat it.

Also, make sure you have the best team of doctors involved with your treatment. Are you being treated at a major cancer center? I don't know the details of your medical system up there, but we have cancer centers down here that deal with nothing but cancer. The medical teams are as expert as you can find on the planet as they see cases just like yours hundreds of times. So if you have cancer centers up there, try to get treated in a cancer center if you are not already. Will pray for a good outcome to your thyroid issue.

Thanks Kirk - I am most grateful for the support right now as I am scared and my hubby is away on business in San Fran until Tuesday. I sneak away from the kids to see what advice I can glean from all the brave survivors on the site and you are right..no point in worrying & faith in God will get us through this. Hopefully, I can post good results from the next biopsy (which is a U.S. guided needle biopsy to my right thyroid gland) and is to happen one day this week. Not at the cancer centre but my local hospital in Abbotsford, BC: by the way we don't yet have a cancer centre close by, but a hospital converted to a cancer centre is where I had my partial glossectomy & my specialists have been everywhere.(Makes it quite confusing & doesn't help much with the stress, but a cancer centre will be in Abbotsford by 2008!) Back to kids & soccer, going to enjoy the sunshine...I hope your hurricanes are gone & wish you sunshine also!

Dear Tiamaria
I am so sorry to hear you are going thru this stress again but, please try not to worry too much until your Doctors are sure.
We will be sending our good thoughts and wishes your way.
Take care
Marica
-----
caregiver to husband Pete, SCC stage IV Dx 4/03 finishedt treatment 7/03 and doing great.

Thanks:rolleyes I feel like such a hypochondriac:then I remember what I HAVE been through & I forgive myself a little whining.
For anyone with ANY symptoms:do not be passive, Cancer isn't;but neither is knowledge and I see how many people are doing Proactive things on this board and it makes me proud to be a member.
Back to work & kids..no time to worry, thank God.
Thanks again for the words of wisdom Marica, it does help!

Tiamaria, it's natural, once one had had surgery to worry about a recurrance. A mass in one's thyroid, especially afte one occurance is not something to ignore, and no you're not being a hypocondriac.

Not sure where Abbotsford BC is, any place close to Vancouver? The surgeon that did both my surgeries is in the Vancouver area, E-mail me if you'd like and I'll send you his name and the links to their site.
Bob

Tiamaria,
just hang in there girl and let us know the outcome. We have worldwide connections you know!
Take care
Marica

Hello Tiamaria,

Sorry you have to worry about it being cancer again. I can tell you it's natural to worry, the trick is controlling that. This diaease and treatment is one hell of a roller coaster ride on your emotions as well as your body. If i'm reading your posting correctely it hasn't been
dx as cancer yet? "It ain't cancer til the Path report says it's cancer" Hang tough and as Marcia says let us know when you can. You will have alot of questions to ask which this forum can provide.
Remember you are not alone in this.

Best Wishes, Danny Boy

God I wish you guys WERE my oncologist, yes Abbotsford is about an hour east of Vancouver, BC, but my glossectomy surgery was in Surrey,my family Dr and general surgeon who got my ultrasound results in Abbotsford and my oncologist in Port Coq, my ENT in Chilliwack, (1st rad scan at RC hosp saw surgeon there in April something showed in my thyroid then)my H & N surgeon in New West...I think???!! & my scheduled 3 mo rad scan was not booked (not canx either) due to the RC hosp.getting renos on the neuclear medicine wing so I had to call ALL these guys to find out what & where I get my follow up scan!(Had ultrasound instead) Had I not done that I wouldnt have known the mass has doubled in size to 2cm from May until now & thank God it isnt RX as cancer yet but I am not sure what to do now as they "arent booking for the U.S. needle biopsy until Nov" at Abbys hospital. I said that is NOT acceptable - I need to find somewhere else to go I am not WAITING AGAIN when even the surgeon last week said I need to get it done right away..We are calling ALL the hospitals tomorrow. I picked up my hubby from the airport tonite and we are on a roller coaster ride together...poor he! I do look to you all for advice & thank you & hope its not so hard ALL the time for you all. Uphill struggle from work tomorrow I will link to my email, phone & BOOK this thing......Why does everyones DX & info show on posts & not mine?
Ciao compadres!

Tiamaria,

I hope you can get the biopsy scheduled sooner -- November seems much too long to wait under the circumstances. I still have followup visits with my oncologist at least twice a year, and if he sees anything suspicious, he insists on having tests done within a matter of days.

You asked about getting your DX info onto your post. To do that, go into "My Profile" and then "Edit Preferences". You will see a Signature box where you can enter this information.

Cathy

In case you don't see the "my profile" link, it is near the top of the page right below the "new topic" box. It's small and a little hard to see.

Tiamaria,
Is it possible for your general practitioner to refer you to an ENT doc in Vancouver to speed things up? It's a pain to have drive into the city but if you can schedule the biopsy sooner, it would be worth it.

Good luck and best wishes, Sheldon

Presently I am devoted to calling hospitals within 1 1/2 hours of my home..it certainly isn't a problem to drive for a sooner biopsy & peace of mind. The surgeon who got my U.S. results last week told me it would be within a week (so I dont know why not, other than booking problems locally) & he wants to follow up ASAP. "Play the cards u r dealt" I guess & I am NOT playing with a stacked deck

My ENT has referral appts only that expire in 6 mos so I need a new one imagine that!

G'nite all & my best wishes & appreciation to the Forum

I got an appointment! Oops I posted under general board.."Angels are everywhere"...you guys ARE our Angels. Thanks & I will post my results after the biopsy on Oct 08, 2004.
Tia Maria
Diagnosed Feb 05, 2004

Sorry to hear about the recent developments.

Just wanted to let you know, however, that I had to smile about your comment of running to the computer when the kids are quiet, and running off to soccer games. That's me too! It feels kind of nice to know that others are in a similar place.

I also am waiting for Oct 8. I return to my doctor to find out if more surgery is coming (good news is that 2 doctors say no sign of cancer, but may face surgery due to other problems). I will be thinking of you and saying a little prayer.
Michelle

Hi Michelle, Danny, Bob, Kirk, Marica, Cathy, Rosie & Sheldon...otherwise known as "Angels"
Thanks for caring & support-I have a feeling I will be needing some more in the time to come as my biopsy results have come back as follicular cancer so my Thyroid now needs to come out. Hope your outcome is good news, Michelle (the hardest part is telling the kids what to expect without being too honest or dishonest.) So I am once again online while they are at school. I have the luxury of kid free contemplation about my upcoming surgery...will it be easier? Will I need radiation or chemo? Will the specialists help with these decisions? As Helen said in another post "forewarned is forearmed!" I do know more THANKS to the forum & will post any good advice I learn along the way.
Take good care.
Maria

Hi Maria,
Sorry to hear about your new occurence. That's the pits!

Are they taking the entire thyroid or just one side? I had partial thyroidectomy and parathyroidectomy when the removed my larynx. Doctor had hoped that the other side would kick in so I would not have to take synthroid. However, the part that was left was too fried by radiation to pick up the slack. I had no cancer in the organ itself, not now take synthroid daily as it the other half does function. Took forever to get my dosage correct. Make certain you have a full thyroid test before they do surgery so you know your TSH, T3, etc. levels are so you can get back to YOUR noraml. The noraml range for these numbers is large so you need to know what your normal is. Have you had radiation to that area before. It would help if you had a report with that info from before radiation. They should have done one. I don't have my tests with me, so don't have all the field names on test. Will try to remember to look. I will also talk to one of the guys I work with who had thyroid problems. I think they removed his entire thyroid and he is doing just fine.

Take care,
Eileen

Thanks Eileen, no I haven't had radiation and wouldnt you know I broke the cardinal rule...always bring someone to your appointments as I do beleive he is wanting the whole thyroid out but I could be wrong as the biopsy was taken from right lobe only and all I heard was "further surgery is a neccessity!" I will find out whilst being booked.
Good news is awesome to hear either way, TA!
Take good care
Maria

God Bless you Maria, will be thinking of you and praying....Love, Carol

Maria
I'm sorry that you are facing more surgery, get your pen and paper out girl, write the questions down before you go back, need you to get this sorted once and forever....
Sunshine... love and hugs
Helen

Maria,

I am sorry to hear the news. I am hoping for the right words to come when you tell the kids and a speedy recovery for you.

Ed

Thanks to you all for responding ...I do apologize I have been off the internet due to cable problems and guess what?..I missed you! I had a wonderful day today-my cable guy turns out to be caregiver for wife of breast cancer(this year) and he will be going to MY SAME H & N surgeon on Monday for thyroidectomy (which I am waiting for!)
Small world isnt it?...had the neighbours curious I will bet !...both of us feeling each others neck lumps!!
Anyway I am glad to be back and feel much more positive with what needs to be faced as it seems I am in good company. (We joked about our soon to be "second smiles" on our necks, ya know.. wrinkles, turtlenecks, etc!
Take care
Maria

Tiamaria, I also had thyroid probelms right after my first ORAL CANCER in 1989. It turned out not to be CANCER of the thyroid, however the radiation ended up destroying it. I had to have half of it removed for it was so enlarged it was cutting of my air way. I was told way back in 1989 that it would be better for me if the CANCER was in the thyroid for they can just take the whole thing out and you can take pills to take care of all the things that the thyroid does do for the body, and believe me it does a lot. I am now on synthroid for the rest of my life. I have had hardly any real probelms with all of that...LOOKING back I wish it had of been thyroid CANCER instead of TONGUE. At least maybe I could talk and eat today...WHO KNOWS? I will pray for you that the news will be good...Always Miss Vicki

TiaMaria
Oh how I wish you did not have to go through this S*** again. On the positive side ... you can live without the thyroid right! Just be a pain to the Docs, get all the info as Helen said..I took a recorder with me to all appointments as my brain was not to be trusted.
Lots of prayers and good wishes coming your way.

Miss Vicki ...you are a trouper, you have had to deal with so much. I dont know if I could have handled everything as well as you have.
Love to all
Marica

Maria
Have you got a date yet? Don't worry about the scar I know someone who had the op 8 years ago, about twice the width of my trachy scar, anyway good excuse for a gorgeous gold choker necklace, keep us up to date, please...
Sunshine... love and hugs
Helen