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#196624 06-17-2018 01:36 AM
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My daughter is 23 and was diagnosed last week with Squamous cell carcinoma with keritonizing features... Honestly, we all are pretty scared and shocked when we received the diagnosis. The day before yesterday she had her ct scan and we are currently awaiting results. I just wanted to tell you that reading posts has given us a little more hope. I applaud your courage and your will to live! Thank you! 💖

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Welcome to OCF! Im so sorry to hear about your daughter's oral cancer (OC) diagnosis! You have found the very best place to get info and support to help you nd your daughter get thru whatever path she takes. There have been other young people that have been thru this. Being young is actually to your daughters advantage, she should recover faster than an older person.

The best thing you can do to help your daughter is to focus on what is within your control. One of the most important things will be her intake. Every single day from now thru at the very least she hits her first year after finishing whatever treatment she has she will need to take in a minimum of 2500 calories and 48-64 oz of water. If your daughter is on the average or slim side, she may want to up that to 3000 calories or more on a daily basis. Anyone who is slim or average going into this will definitely want to gain a few extra pounds. I know most young women do NOT want even one extra pound but weight loss during treatments is NOT a good thing, its a sign shes starting to struggle. No matter what her treatment plan will be, she will likely encounter some eating issues from surgery or radiation treatments. I do tend to nag people about this, sorry!!! Most patients (myself included) do not fully understand the importance their intake plays in how easily they get thru the upcoming treatments. The better they do with hitting their daily minimums , the easier this will be.

Most people are good hearted and truly want to help when someone they know gets a cancer diagnosis, often they just do not know what to do. When people offer their assistance, take down their name and contact info on a list. Down the road having people that can help both you and your daughter will be a huge relief. Theres a million things that can be done to make this a little easier on your daughter and on you as her caregiver. Things like cooking a meal for your family, mowing the yard, driving her to appointments, walking the dog, picking up prescriptions, taking a "shift" to stay with your daughter if shes in the hospital will give you a break, etc can be very helpful.

As a parent, I can not imagine how difficult this is on you. I cant imagine how upsetting this is to watch your child go thru. Make certain you take breaks to get away once in a while. Even if you go out to a movie, out to lunch with a friend or take a short walk it will give you much needed time to think clearly and catch your breath. Being a caregiver is a tough job and can feel like the weight of the world is on your shoulders. Our members have been where you are and understand what you are going thru. Its not an easy road but it is doable, especially when you have us in your corner to help you and your daughter.

Prior to starting any kind of treatment, your daughter should see the dentist for a thorough check up. If she will get radiation treatments she will need the dentist to make flouride trays. Make sure her oncologist also orders a full blood panel including thyroid levels (men also need testosterone levels) before she begins any treatment. Also a second opinion may be a good idea, especially if you can get her to a comprehensive cancer center (CCC). A CCC is where all the specialists get together to create a treatment plan at a tumor board meeting. Working with a team based approach ensures everyone is on the same page. CCCs have proven to have better outcomes than smaller regional facilities.

Reading about oral cancer will help to make you a strong advocate for your daughter. You will find many stories here which can be both scary and full of hope. On the main OCF site, there are tons of topics covered with correct, current medical info. Feel free to ask questions, we'll always do our best to help.

Best wishes!!

PS.... Ive sent you a private message (PM). Click on the tiny flashing envelope next to the My Stuff tab in the center of the title tabs near the top of any page.

OCF main site --- Diagnosis

OCF main site --- Treatment

NCI list of CCCs

US News Best Hospitals List





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: Jun 2018
Posts: 2
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Christine! Thank you so very much for your kind words. We had a pet scan today, before we get results the Dr has already scheduled surgery for Monday... We are hopeful, but definitely very scared too. I wish that I could just do this for her, but unfortunately it doesnt work that way. I'm trying to get the swing of this site! I love it so far! Thanks again!

Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Wow! That was very fast... very, VERY fast!!! I have a bunch of questions that I hope you wont mind me asking....

Were the results back from the first CT scan?

What did the doc say about it?

Did you mention to your daughters doctor anything about getting a second opinion? If so, what did they say?

Was any staging done after the CT scan?

What other doctors/specialists has your daughter been to?

What treatment plan was created/or was she given one?

Where exactly is the tumor?

Have you or your daughter noticed any changes in her tumor?

What was said about any additional treatments?

Will your daughters surgeon oversee additional treatments as well?


I dont want to alarm you but I feel I must be completely honest. When I think of your daughters Im a bit concerned the surgery was scheduled for only a couple days in advance. Ive had so many surgeries, more than I can count and it normally takes at least a week or 2 for the operating room to be booked after the medical insurance is checked. Ive also watched hundreds go thru this initial diagnosis/treatment situation similar to what your daughter is currently going thru.

Any reputable doctor will have no problem with their patient seeking a second opinion, they will encourage it to make sure their patient gets the very best medical care. I hope you can easily obtain copies of the biopsy results and any other office notes on file. Thats an important part of having another qualified doctor review your case. IAfter everything Ive seen happen with oral cancer patients, Im always leery of any doctor who rushes the patient into surgery without giving them time to get another opinion. It sounds like you have already scheduled your surgery. Just remember.... surgeons cut and will always advise a patient to have surgery. Once its been removed, it can never be fully restored to exactly its original function and whats removed can never be put back. Of course with cancer, patients will want to have it removed as quickly as possible. For every situation, immediate surgery isnt always necessary.

I dont know if this is something that you will need or even consider, but Im including it just in case. If you end up traveling for another opinion or treatment, there are free or very inexpensive ($10/night) places to stay near most of the CCCs. Hope lodge is one of the most common ones. There are even airlines that provide free seats for cancer patients who are traveling for their health. I dont know about availability but Id suspect these things would be in great demand. The link is below for the financial aid section of the main OCF site.

Main OCF Site... Understanding section

Main OCF Website... Financial Assistance including Air travel/Lodging




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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