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#189019 04-05-2015 08:14 PM
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Neicy Offline OP
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Hi my name is Denise and my biopsy results came back on April Fool's Day. They biopsied my tongue after a routine dental appt. I am still in shock though I probably shouldn't be....I was a smoker for years. Feeling very stupid and scared. Waiting to hear about appt with cancer center for further testing and treatment. I have been really worried about my job, money and how to manage to pay bills if this takes awhile to take care of. I am alone though I do have some friends. Anyone else have this concern right out the gate like this?? Praying for some good news in the next couple of weeks. Hoping the best for all. Thank you. Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
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"OCF Down Under, Kiwi"
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I feel for you, Denise. that initial news is as if a chasm has opened up in front of you.

We have free medical care here and in the past I've taken sick leave. You might have a small tumour that needs a minimal excision ... if it's bigger, reconstructive surgery and if there are other relevant prognostic factors you might need radiation. I always look at the worst case scenario then hope like mad for the best. At least your dentist picked it up!

Whatever the diagnosis and treatment is, be assured that surgeons can do marvellous things with tongue surgery now.

Having no partner/caregiver can be daunting but is manageable. People turn up to help. There are support groups and the Cancer Society.

And we will be here:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Jun 2007
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Denise, welcome to OCF! You are in the best place for info and support to help you get thru your OC battle.

When I was first diagnosed, I was a single mom with 2 teenagers. There was no help available so I know where you are coming from. You will need helpers. Most people really do want to help but dont quite know what they can do. Others (and these will really surprise you) will run for the hills and avoid you like the plague. Some people cant handle someone they love being sick, maybe its the fear of being forced to face their own mortality that spooks them. Starting right now, anyone who offers their assistance tell them when the time comes you will let them know what they can do. Write down every single person (weather you are close with them or not) with their contact info. Contact the American Cancer Society and get the ball rolling. They can help with $300 to use for transportation to treatments or a pharmacy voucher to help with prescription co-pays.

I know its not easy but try not to get too far ahead of yourself with the "what if's". Worrying wont change anything, it will only cause unneeded extra stress making you feel worse. Read and educate yourself. An informed patient is a strong advocate. We are here for you and you can lean on us.

Best wishes!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: May 2013
Posts: 134
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Posts: 134
You've found a great place for love and advice. The only things I would add are 1) as best you can don't worry about what you don't know. As Christine said above the what-ifs can easily make you lose focus. In my experience 80% or more of the things I worried about never happened. 2) Starting today do what you can to get stronger and healthier. If the prognosis is awesome and little to nothing need be done, well you're stronger and healthier. If you are heading into a fight you'll be better equipped! Win-win.
Bless you and good luck!


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Joined: Apr 2015
Posts: 91
Neicy Offline OP
Supporting Member (50+ posts)
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Joined: Apr 2015
Posts: 91
Thanks to you guys for your encouragement. It's true...the "what if's" do make you lose focus. I had my follow up today with the oral surgeon that did my biopsy. He said I would definitely be having further surgery, didn't know how extensive. Tomorrow is my CT of the neck. Scary as heck. Friday I will get the results when I go for my first appt at the Cancer Center. I can't believe how life and especially my perspective has changed in just over a week. Trying to handle things that I can before any kind of surgery. Good News today though! A friend of mine is gonna lend me $10,000 for a down payment on a condo. That will bring down my monthly bills by a large portion...I am renting now and if I have to be on disability, the less my bills are the better. So, that was good news. I also went for an orientation meeting at this place called "Gilda's Club". Hope everyone is doing good and thank you again for your encouragement and kind words. Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
Joined: Nov 2009
Posts: 644
Likes: 1
"OCF Down Under, Kiwi"
"Above & Beyond" Member (500+ posts)
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"OCF Down Under, Kiwi"
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Joined: Nov 2009
Posts: 644
Likes: 1
I like that your friend is helping you. Some people really rise to the occasion when a friend has cancer. I've found that to be the case a number of times. Just when I'm wondering how I'm going to cope, someone offers to do something heroic!

Gilda's Club sounds helpful. You are setting yourself up well before treatment. Now make sure you eat well in case your surgery hinders your eating for a while.

Best wishes:)


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Joined: Mar 2015
Posts: 55
PJE Offline
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Mar 2015
Posts: 55
Hi Denise. My diagnosis was five days before yours, and although it is different cancer I am willing to bet I've been experiencing the same emotions and feelings as you. I can sure relate to the change of perspective and the worry. For the first week and a half I couldn't go more than 15 minutes without thinking "holy crap, I have cancer".

I can tell you that every test I've had (biopsy, CT scan, PET) has increased my level of knowledge and sense that I can overcome this. So I hope your own confidence improves the way mine has. The folks here have been really supportive and the information you can find in past threads is invaluable. Good luck to you with your battle.


Peter, age 62 at Dx
3/27/15 Dx T2N2aM0 Tonsilar P16+ G3 SCC
4/6/15 Full PET clear except for above
4/24/15 TOLM tonsillectomy/clear margins. Neck dissection 20 nodes (1 w/cancer & extracapsular extension)
5/28/15 PEG in
5/27 - 7/10/15 Daily Radiation to 66 units cumulative; Cisplatin weekly X 7
8/24/15 PEG out
9/24/15 Full body PET - N.E.D.
12/22/15 CT and physical exam. Continued clear.
3/11/16 Physical exam. Continued clear.
7/12/16 One year post-treatment! CT clear.
7/7/17 2 years post - still clear
Joined: Sep 2011
Posts: 61
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Joined: Sep 2011
Posts: 61
Denise, defintely contact the American Cancer Society. I had to travel for my treatments and they were able to hook me up with a free hotel most weeks. They were a Godsend!


Do not go gentle into that good night. Rage, rage against the dying of the light.

31 @ Dx SCC of tongue right side May 27, 2011, no tobacco, light drink
Partial gloss. and ND June 2011 - 2 jaw nodes positive ("encapsulated")
33 rads ended 10/21/11.
Dx Non small cell lung cancer 05/18/15
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Welcome Denise,

I shared the same concerns as you when I was first diagnosed, living alone and being very independent. What you mention about work, money, and management of bills should be considered as you move forward. When I went through chemo, the social worker mentioned filing SSDI, and taking other measures, just in case, and I laughed to myself saying I'm not doing any of that. Well, I wound up having to do that much sooner, and more.

As far as cancer, that was the easiest part, my doctors took care of that. People, getting what is legally due, and dealing with the things you mentioned proved more difficult, still is, especially when ill.

Not that all situations have the same outcome nor can we predict everything, but everyone should have a plan in mind before treatment starts, more like a plan A, B and C for me, become familiar with your work benefit packages, employee manual, FMLA, short and long term disability, continued payment of bills like through automatic bank payments, transportation, food delivery, food preparation, house cleaning, pet walking, even what your medical and prescription plans cover, do not cover. Some things you may do yourself, have another person, relative or hired help do, and can be changed, modified as you proceed along.

I also suggest to start having your own file with every test, procedure, pathology done. It will clarify things, can save time and money later on, if copies are needed.

Good luck with everything.



10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Joined: Apr 2015
Posts: 91
Neicy Offline OP
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Apr 2015
Posts: 91
Well, I had my neck CT and am getting the results on Friday at my first appt at the Cancer Center. I worked last night (RN, Emergency Psych Unit). Well, it's all starting to sink in now. Some of my coworkers are clearly uncomfortable. I don't really care, I have my own crap to worry about right this minute. I am worried about what the scan might show. I don't want my throat involved in any of this. For some reason, that creeps me out more than the rest. I also realized that I could very well not be able to sing anymore. I do it just for fun, I'm no Barbara Streisand. I guess I have been starting to feel sorry for myself. Like PJE said, "holy crap, I have cancer."
I am trying to focus on getting my stuff in order and taking care of things prior to any treatment to make things go more smoothly. Thanks to everyone for the support and encouragement. Denise


Biopsy tongue 3/24/15
Diagnosis SCC tongue/floor of mouth
Partial glossectomy, resection and right neck dissection done
4/22/15
T2aN0M0
05/01/2015-no further treatment indicated at this time,
monthly check ups for two years
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