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#192857 08-15-2016 07:28 PM
Joined: Aug 2016
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Csfee Offline OP
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Hi Christina, I have not gone trough with surgery yet, I am wanting to go withradiation first. Please advise based on you experience. I see the surgeons on August 22 and 23rd.

Last edited by gmcraft; 08-16-2016 06:15 AM.
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Welcome to the forum. I am sorry that you have the need to join this circle of friends, we have all been through the "journey" in one capacity or another, and we do understand what it involves.

Have you already been given a treatment plan or are you waiting to see the surgeons first? It would help for members of the forum to respond to your posts if we could have a bit more information, such as where the tumor is and what stage it is at.

I am sure ChristineB will be along soon with her response. Please keep us updated and do let us know what the surgeons say.

Keeping you in my thoughts.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Welcome to OCF! Im sorry you have a need for our group.

Can you please give me more info about your diagnosis, exactly where your cancer is located, how was your cancer diagnosed, and anything else pertaining to the cancer you feel is important.

At the very least I recommend getting a second opinion. If possible going to a Comprehensive Cancer Center (CCC). Thats a treatment facility where a team based approach is used so all the specialists are on the same page. Hopefully a CCC is an option for your treatments. When looking at treatment plans, remember surgeons always say surgery is the way to go, same for radiologists and medical oncologists say chemo is necessary. Also remember once its been removed you cant put it back to its original functionality (even with skin graphs). This is why a second opinion is so important! Whatever facility you go to should be going by a very specific flow chart.

Usually the treatment plan would be surgery to remove the cancer. Then after about 6 weeks for recovery most patients will go thru 6 or 7 weeks of radiation treatments. Of course every [patient is slightly different so what works for one might not be the best for another. After having radiation a patients healing capabilities would be affected where their healing time is much slower.

No matter what plan you take the important thing is to eliminate the cancer and do everything possible to ensure it doesnt return. Another very important part of this is to take someone along with you to all your appointments. This way they can take notes so u can go back later if you forget or didnt understand something.

List of CCCs


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: Oct 2006
Posts: 383
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Posts: 383
Welcome Csfee!

You have found a great group of people who help and care for one another! Take full advantage of all the resources OCF has to offer! Keep your Dr.'s speaking to you at our level, slow them down, ask lots of questions, and make notes. If any of this offends a doctor then you obviously have a doctor you don't need on your team! Christine and Gloria offer great advice, especially sharing treatment plan details you have.

Prayers and Best Wishes on your journey.


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****


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