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#198179 04-24-2019 07:31 AM
Joined: Apr 2019
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I am 34 years old and have been diagnosed with Tongue Cancer. I find out TOMORROW what stage of cancer I have, if the cancer is present in any lymph nodes, and (I'm assuming) will receive a treatment plan.
My husband and sisters know of my cancer but I haven't really told anyone else b/c I need to find out answers.
I feel like I needed to get on here any say something to a chatroom full of strangers as I feel as if I'm on the brink of having an anxiety attack.

Thank you to everyone who gets on here and posts their experiences, advice, or research news. It helps.


~DD
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Welcome to the forum, although i’m sorry that you have to join our circle of friends.

You will probably find out about your treatment plan tomorrow, whether it will involve surgery, chemo and radiation. Are you being treated at a comprehensive cancer center where they use a team approach and have a lot of experience treating oral cancer? Have you considered getting a second opinion?

It’s not easy to take this bad news without anxiety as it brings up all kinds of questions. When you find out more about your treatment plan, it may help for you to confide in a few friends who can give you some support down the road, like driving you to treatment, helping with housework or just lend an ear. Do come back and post any questions you may have; we may not have all the answers but we have all taken the journey either as patients or caregivers. Or you may simply want to vent — which is fine too.


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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Thank you for your reply!

I am meeting the oncologist for the first time tomorrow, so I'm not sure even what the approach is. However, the ENT oncology ward at the hospital I will be a patient at is highly rated.

I have had this spot on my tongue for quite some time and has been monitored. I had a biopsy in July of 2018 which was screened for cancer... none was present in the biopsy. I had another biopsy last month (10 months later) and that one did show cancer. Thank you for listening.


~DD
Joined: Jun 2007
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Welcome to OCF, Beebs! You have found the very best site for info and support relating to your recent diagnosis of oral cancer (OC). We have been thru this ourselves or are caregivers for OC patients/survivors so we all understand exactly where you are coming from. We have been there too and will help you get thru whatever path OC takes you on. When patients are first diagnosed they have so many appointments and new things coming at them its can become overwhelming. Many of our members have found learning about OC to be very helpful in enabling patients to be strong advocates for themselves. Our site is Health on the Net certified which means we provide factual and up to date medical info.

To help you to feel more in control of your situation, take it one day at a time and focus on positive things that are within your control. I know it gets scary thinking about all the "what if's" but do your very best to avoid dwelling on things out of your control. Staying busy doing positive things will help you to avoid the "what if's". Almost every OC patient will encounter temporary eating and drinking difficulties at some point in their journey. To avoid having cravings down the road when you are not able to enjoy your favorite foods, start having them all now, desserts too. Dont worry about calories at all, most OC patients end up losing weight from their treatments and increased metabolism burning up calories much faster having cancer. I also suggest reading both the posts here and also on our main OCF site where theres page after page of important info. Ive also included the link to our Understanding section where you can easily spend hours every day reading new info. If you havent already done so it would be a good idea to go for a second opinion before consenting to any surgery or treatment plan. If possible seek a comprehensive cancer center (CCC) where the doctors use a team based approach and they have the best cure rates.

As you tell friends and family of your illness, you may be surprised by some reactions. Its also very common for well meaning friends and relatives to offer advice (almost always its wrong), recipes, other alternative suggestions, etc. Everyone it seems knows their spouses cousins neighbors mother had XYZ and treated it by drinking smoothies made of trees.... thats a far fetched example LOL!!! But seriously, it really does seem like everyone knows someone who knows someone who did this or that often they claim with their doctors blessing but their advice does NOT help anyone with OC. Im letting you know this so you are careful and check things with your doc before trying anything. Dont be surprised if some friends and relatives who had always been close to you suddenly disappear after they are given you cancer news. Sadly, some people arent able to manage their fears and set aside their feelings to remain close with you. Its happened to me and many others here. Once the patient finishes their treatments and gets a good health report, most of the MIA come back and pick things up where they left off when they ran for the hills. Anyone who offers their assistance tell them when the time comes you will let them know what they can do to help. Theres a million things to make your life easier that your network of friends and relatives can take care of. Over the years Ive learned most people really do want to help but usually they dont know what they can do. Things like cooking a meal for your family, picking up dry cleaning, pharmacy prescriptions, grocery shopping, walking the dog, taking your children (if you have little ones) for the day so they can have a fun time while you rest, doing a load of laundry, driving you to appointments, helping kids with homework, mowing the lawn, etc are just a few of the little things that add up to making a big difference in your life when you arent feeling the best.

You are among friends here so dont be shy about asking questions or posting about personal things. Our site is completely anonymous and private, we only know what you tell us and it stays here among friends (who are from all over the world). Yes, we are strangers but we do understand exactly what you are going thru and how you feel. Ive made many life-long close friends from this online support group. Hang in there!!!


NCI list of CCCs

US News Best Hospitals List

Main OCF Site, Understanding OC




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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