| Joined: Jan 2015 Posts: 3 Member | OP Member Joined: Jan 2015 Posts: 3 | Hi Everyone, Just got stage IV tounge cancer diagnosis for my 74 year old Dad. Quite a shock for us. Found it late - already in three lymph nodes. Surgery is last resort as they would have to remove most of his tounge. Interestingly, Dr. was sort of positive...but what I read it doesn't seem so positive.
Seeing Dr. Weinstein at U of Penn Wednesday. Hoping he has better news. I read some of the posts on here and it looks like there are stage iv survivors which is very encouraging.
Any advice for us as we go through getting opinions and setting up a plan for treatment?
Thanks so much.
Erin Jacobs Daughter to Tom Stage IV Tounge New Jersey
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Erin, welcome to OCF! Im very sorry your father has been diagnosed with OC. You will find lots of important info and support on this site.
Treatments are difficult for most patients. But it can be done. The key to making it easier is focusing on what is controllable... the patients intake. Every single day they need a minimum of 2500 calories and 48-64 oz of water. If they can take more in like 3000 or even 3500 calories that can only help make it easier. Many struggle with taking in enough water. Ask the doc for an open prescription to get hydrated a few times per week in the chemo lab. A couple bags of saline can help the patient feel much better right away.
Make a list of every single person (and their contact info) who offers to help. Tell them when the time comes you will give them a call. There are many little things that can add up to making a big difference in rough weeks of treatments. People generally are good and want to help but dont be surprised if some will not handle it well and they head for the hills until its over.
Read and learn from the ones who have come before you. There are thousands of posts to learn from and many important things on the main OCF pages.
Best wishes! ChristineSCC 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 | | | | Joined: Jan 2015 Posts: 3 Member | OP Member Joined: Jan 2015 Posts: 3 | Thanks so much, Christine. Looks like you have been through a lot yourself. I will look around the site - looks like tons of info. Thanks for the advice, I'll put it in my book! I'm keeping track of all the advice I get!
Erin Jacobs Daughter to Tom Stage IV Tounge New Jersey
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | My advice is definitely a second opinion. His cancer should be treated with surgery first. They can rebuild his tongue and this would be the best way to knock the cancer on it's butt. Plus surprisingly it's easier to recover from than radiation. With three nodes involved I would anticipate a date with rads and chemo too. The reason I am saying surgery would be the best option is that unless it is HPV related cancer, rads and chemo alone doesn't always kill the tumor. This is why the guidelines state for this type of cancer the first line of defense is surgery - followed by rads and chemo for any clean up. If there are other reasons to avoid surgery (health reasons) then I understand. If not - do get a second opinion ( I think you said you were at Upenn) at a CCC. Hugs and best of luck.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome to OCF Erin. As you have found there is a lot of very solid and reputable information on this site. Start reading and feel free to ask questions as your journey progresses.
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 | | | | Joined: Jan 2015 Posts: 3 Member | OP Member Joined: Jan 2015 Posts: 3 | Thanks guys! Was at U Penn today, also got the opinion that surgery would be the last option. The only reason being is that they would have to take most of his tounge. Dr. Weinstein wants another biopsy and to take a look for himself so he will have that surgery nest week and then we will discuss options again. Such a long confusing process...nice to come on here and read everyone's stories. I even asked a lot of questions based on info I read on the forum so thank you already!
Erin Jacobs Daughter to Tom Stage IV Tounge New Jersey
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