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#191639 01-28-2016 04:26 PM
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ALK Offline OP
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It's been rather hectic since I was diagnosed.
First I was told it was probably just my tongue, easy peasy, surgery and I'd be good.
Then I had a PET scan and something lit up in my neck. So then I had a CT (CAT?) scan and apparently there are 3 abnormal lymph nodes on the left side of my neck. So the ENT told me treatment would likely be a double approach, either surgery and radiation or chemo and radiation. I've been added to the tumor board at the local hospital but they don't meet for another week.
I decided it was time for a second opinion. Or two. I've got two appointments tomorrow in Boston, one at Tufts with a head and neck specialist and one at Mass General.
But when I talked to the ENT today, he said something about using all three types of treatment because this 'can be' aggressive in young women.

I feel like this is a conspiracy. That's probably just denial but, really? From surgery and it being in the 'early stage' to possibly needing all three and going to see this doctor and this doctor and this doctor and this other doctor and this dentist also and this doctor.

Why is the approach to dealing with cancer so fear mongering? I'm not trying to devalue what people have fought through but it just seems insane to me that instead of curing a disease, long debilitating and costly treatment is the go to answer.

I started getting really mad last night trying to fall asleep convincing myself that I don't know if they're telling me the truth or not. (That truly does seem quite silly when I write it down...) When the doctor says that you have cancer, it seems innate to follow his instructions and do as he says but I need to understand more about this. I need legitimate sources of information about diagnosis and treatment.

Has anyone felt this way? Am I just in denial or is there a possibility that cancer is big business for the medical industry and blind acceptance is the patients only role? How do I fight for my right to seek alternative treatments? What are alternative treatments? Why are they alternative!?

I'm quite thankful for this board. Thank you to everyone for your guidance and support through all of this.


Amanda
________________________________
SCC Stage IV, L-Lateral Tongue T1N2bM0
Age at diagnosis: 26, HPV-
Dx: Jan.14.2016
Surgery-Partial Glossectomy & MRND: Feb.10.2016
Port & PEG: March.16.2016
Rads: March.23.2016-May.9.2016
Cisplatin: March.23.2016 & April.13.2016
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Get a second opinion at Tufts but make sure the The Dr. is an ENT Oncologist and ask questions also take someone with you to listen and ask questions. I take it you must be from New England, I was treated at Dartmouth. Then listen to their recommendations and attack this with everything they offer, most alternative treatments don't work as well as the normal protocals. Listen, ask questions and ask away here others will help. Keep a positive attitude and good luck. Semper-Fi Bob



Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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I'm sure your doctors have your best interest in mind! There are general guidelines set forth by the NCCN, which most follow, but then it can differ somewhat based on the hospital, the doctors training, and experience, including all the possible combinations with the three modalities, so you can see three different doctors, and get three different opinions. The key is the tumor board, who will have to come to some agreement on the best type of treatments suggested for your particular case.

Surgery is usually the preferred treatment with oral cancer, and recent studies show better outcome also with a neck dissection. Radiation & chemo can be added to get any stray cancer cells, including systemically with chemo, which chemo is also added to sensitize radiation to work better. I believe the key to survival are the nodes, and experienced centers, with high volume in HNC, have better outcome, and more experience with IMRT, which can differ in less experienced centers.

As far as alternative treatments, I'm not one to recommend any, besides medically acceptable, proven complimentary therapies to support recovery that are also approved by your doctors. I do advocate eating fairly healthy, doing some type of exercise when feeling up to it, maintaining healthy weight, avoiding infections.

I hope this helps, and good luck.


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






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I know that this is overwhelming for you right now and downright scary. Definitely scary. Please believe that oral squamous cell carcinoma is aggressive. This is no walk in the park to treat. Having metastasised to lymph nodes makes this a Stage 4 cancer. This needs aggressive treatment.
Definitely get an opinion from a CCC that uses a Tumour Board approach. They will be looking for the best treatment and outcome for you. At this stage of the game, using alternative therapies is not an option by itself. The only curative options are surgery, radiotherapy and chemotherapy and/or a combination of these. Being a stage 4 you do need to hit this hard. This is your life you are talking about. You don't want to be facing a recurrence months after treatment has ended because you chose a softly softly approach to treating this. I'm not meaning to scare you, I just want to impress apron you that this is a serious disease. Hit it hard the first time.
Thinking of you,
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
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Hi,

Sorry you are here but it seems like you have oral cancer, so rather than be clouded about the diagnosis and any grand scheme to make doctors rich, focus on getting those second opinions and sitting at tumor board.

You will be spinning more than now so work hard to try to grab onto the important themes. Since time is so short you won't be able to get educated enough but try to read through the website here and it will help.

Treating this with surgery, chemo, surgery, or any combination is pretty normal.

Good luck,
don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
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ALK, my heart goes out to you. I think you are suffering from a lack of information. You need the big picture and your doctors haven't given it to you yet. We feel powerless in the face of their expertise and sometimes they forget to explain everything to us properly.
The information people on this forum can give you is invaluable. Lots of us have been where you are. I certainly have and it wasn't until AFTER my first big surgery that I became properly informed. Learning about the gold standard treatments for oral cancer that might have spread to the nodes will help you accept the process: surgery to remove the visible cancer, radiation to kill stray cells and often chemo to help the radiation work. It's a tried and true method that has saved untold lives. Sometimes people have (chemo)radiation only but it all depends on the location and nature of the tumour.
We are here to help you get through this. 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.
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Amanda, I'm so very sorry you're dealing with this. I'm sure it feels like you've been hit by a train-total broadside.

I was a care-giver for my mom, and I can only speak on my mom's experiences. She went from a negative biopsy by an ENT (for what ever reason, it was a false negative) of a horrible, painful, fast-growing ulcer on her tongue in September/October of 2014, to a "Stage T2" according to a second biopsy by an oral surgeon and a CT scan in early December, to thinking they'd gotten clear margins in early January 2015 after a hemiglossectomy and neck dissection, to being diagnosed with a very aggressive form of tongue cancer with spread to and out of a node and nerve invasion without clear margins by mid-January 2015 after the pathology report from her surgery came back. So she went from no cancer to early cancer to advanced cancer with removal and reconstruction of half her tongue and chemo and radiation in the span of about 4 months. The kind of cancer cells she had, along with the extension to and out of the nodes, made her disease more unpredictable than many.

What we all learned the hard way is that although we're dealing with science, diagnosis and treatment are not exact science. Even PET scans have to be interpreted and viewed along with biopsies and other information.

I do think there is an ugly side to cancer care, and health care in general, especially when you consider the high costs of cutting edge drugs and health insurance. But we knew the doctors my mom saw were almost as heartbroken as we were that her treatments didn't stop her disease.

I guess what I'm trying to say is that I understand feeling like the answer changes on you out of nowhere, but I'm so glad you're getting a other opinions even with the doubts you're experiencing. My hope for you is that you get a plan that you can believe in that includes the traditional gold standard treatments with doctors you feel a connection with. And if you want to investigate ways to supplement your treatment plan with some alternative approaches that help keep you strong, hydrated, nourished, and with pain under control, while you complete your treatments, that can only help.

I'm wishing you strength, sleep, and some peace of mind. I'll be thinking about you as you navigate things.



Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14);
1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr;
2/2/15 RT/carbo/taxol;
4/15/15 CT clr;
5/15 neuropathic/trigeminal pain/headaches;
6/15 recurrence flap margins/BOT; cancer encroaching skin
7/23/15 hemiglossectomy; clr margins & nodes
10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth
11/5/15 left cancer behind




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Im sorry you are struggling with this. You must feel like the weight of the world is on your shoulders.

Im concerned about your post asking about alternative treatments. Sadly, OC patients do not have options for a cure with anything alternative. The only ways to eliminate this type of cancer is either surgery, radiation with or without chemo or a combo of surgery, rads (and maybe adding chemo). By itself chemo is not curative. Beware of anyone doctor or facility that claims there is a secret, easier, less invasive option to curing OC. Any members who have attempted to go the alternative route are no longer with us.

Best wishes with everything you are facing.


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
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I agree - go by your doctors and use their insights - they know best and base if tongue is a very hard disease

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I truly feel for ya. And know the feelings of fear and denial. I was just recently diagnosis with OC. It sucks on so many levels to try and comprehend whats going on. Read and Read about the options and what your Drs are telling you. This is an amazing site for information. The people here are amazing with a wealth of information and just plan being here for you. we are all in this together.


squamous cells carcinoma on left side of tongue
Stage 1
surgery Feb 11th
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