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#194353 05-03-2017 01:08 PM
Joined: May 2017
Posts: 2
AliciaM Offline OP
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Joined: May 2017
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Hello everyone! I was told by some nurses that this is a great site to join so here I am. I was diagnosed last September with SCC on my tongue. It started like many as a sore that wouldn't go away. At the time I was 4 months pregnant and we did surgery and believed they got everything. I had no ct or pet scans done and my doctor was just monitoring it. Well while I was in the hospital after having my baby ( healthy little boy) one of the nurses recommended I get a second opinion from a different hospital in the area . which I did. The ENT didnt suspect anything had returned but ordered a ct just to be safe which did show an enlarged node at level 4-5 on the left side. I went for a FNA and it tested positive for SCC. That was 4/17 I believe and we have been in hyperdrive to get all the tests done and see all the doctors I heed to by 5/5. I had my pet scan done today so I an anxiously awaiting tomorrow when they call hoping for good news. As of now I am having more of my tongue removed and neck dissection unless pet shows anything else. Any advice for the months ahead?? I have a 10,2, and 6 week old and my husband and I are really nervous. I will get officially staged and graded after pet and pathology comes back from surgery but I know as of now I will be doing rads with possible chemo. I've read a ton and my doctors are great but it's very scary at 29 to hear all this. I did smoke for a few years but rarely drank and its HPV negative. Thanks so much for taking the time to read this.

Last edited by AliciaM; 05-03-2017 01:10 PM. Reason: Spelling

9/16: diagnosed stage 1 SCC of the tongue. 10/16: surgery to remove tumor. Pregnant at the time and did not continue treatment. 3/28/17: switched drs and scheduled ct scan. 4/17/17: ct scan shows enlarged node level 4-5. 4/19/17: FNA shows SCC. From this date to 5/3 met with dentist, audiologist, and did pet scan. 5/3: pet scan showed evidence of infected nodes on both sides. 5/5: partial glassectomy and bilateral neck dissection
AliciaM #194355 05-03-2017 06:31 PM
Joined: Jun 2007
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Hi Alicia! Welcome to OCF! Im so happy to hear you were referred to us by nurses. Sounds like they really know their stuff too as the nurse advised you to go to a different place and get the second opinion. That nurse's suggestion could very well have saved your life. Im so glad you listened and went.

Im so sorry to read about what has brought you here. This is not easy at all for anyone. But, one thing that will help you greatly to overcome the harshness of rads is your age. Being young helps patients to bounce back quicker.

Read both here and on the main OCF site. You will find correct, up to date medical info. OCT takes pride in being one of the few medical websites that adheres to Health on the Webs tough criteria and surpasses their requirements.

Having 3 children to care for and potentially going for rads in the near future means you will definitely have your hands very full, especially with an infant and a toddler. I suggest start now by writing down anybody who offers their assistance. Tell them when the time comes you will let them know what they can do to help. People often dont know what to do but they really want to help the patient and their family. I hope you and your husband will take all the help that is offered. I would also reach out to the American Cancer Society (ACS) and ask what they can do to help as well. They give a voucher to pharmacies to help patients pay their prescription co-pays or they will help pay for transportation to their treatments up to $300. ACS has a driving program to help patients get to their appointments. This is staffed by patients/survivors and caregivers (I sometimes drive patients to appointments). It takes a while to get set up so get the ball rolling. Even if you get a ride once a week that can take a huge load off your regular driver. Unfortunately most patients doing rads will take strong pain meds and shouldnt drive themselves to treatments.

For now... eat!!! Have all your favorites and desserts too. Dont worry about gaining weight just enjoy everything. You dont want to go into rads with cravings as your sense of taste and ability to swallow will be compromised for many weeks. Start to focus on your intake. This will play a huge role when you do rads.

Best wishes with everything!!!


PS... I almost forgot to tell you to make sure you get a full blood count including thyroid (men need testosterone too). Its easy to get this now before doing any rads. Its very important to get those baseline numbers so make sure to ask your doc about this. You also want to get a thorough dental exam and make sure all your teeth are in tip top shape. For radiation treatments you should get floiuride trays made to use before, during and after rads. This will help to save your teeth from taking a beating from rads.




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
ChristineB #194359 05-04-2017 04:12 AM
Joined: May 2017
Posts: 2
AliciaM Offline OP
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Joined: May 2017
Posts: 2
Thanks for the response it's nice to hear a friendly knowledgeable voice. My mom is going to come stay with us and my oldest is going to my sisters once treatment starts. And yes I have been eating all the crap I want Lol. I expierenced losing some taste buds when I had my first surgery and I was just starting to get them back so im gonna enjoy it while I can. I feel very lucky thatI have huge support from my family and friends who are willing to do whatever they can. Also, the county I live in has a transport service specifically for cancer patients to and from treatment free of charge if I want it so that's a huge relief! We are also 2 hours from the major hospital and the recently built a treatment center here so I will be able to stay local versus driving 4 hours everyday. So far I've had a dental exam, hearing test, ct, pet, and met with the team who will help me decide the best course of treatment after surgery. What is the blood work for? What do you mean by baseline? Also, and this might sound stupid but when is this gonna feel real? I mean I've heard and seen the test results but it doesn't seem like it has sunk on yet or something because I don't feel sick and this is all happening so fast.


9/16: diagnosed stage 1 SCC of the tongue. 10/16: surgery to remove tumor. Pregnant at the time and did not continue treatment. 3/28/17: switched drs and scheduled ct scan. 4/17/17: ct scan shows enlarged node level 4-5. 4/19/17: FNA shows SCC. From this date to 5/3 met with dentist, audiologist, and did pet scan. 5/3: pet scan showed evidence of infected nodes on both sides. 5/5: partial glassectomy and bilateral neck dissection
AliciaM #194360 05-04-2017 05:10 AM
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
One thing to learn about this is everyone is different and will responds in their own unique way to everything... surgery, radiation, medications, recovery, symptoms, side effects, etc. Even someone the same age, from the same area, same sex, and background can have opposite stories regarding what they went thru. This is why its best to focus on what is within your control... your intake. You will see me nag people about this. I dont want to see anyone suffer more than they have to.

During rads, you probably will experience the first week thru hopefully week 3 (or more) without many side effects. Most patients will begin to notice changes during their 3rd week and by week 4 they may start getting tired easily and feel some side effects creeping up on them. The patients who are diligent about their intake can get thru week 4 or even 5 before they feel lousy. Let hope you are one of the lucky one who barely experience any discomfort or side effects at all. If I had to put numbers on it (which I hate doing!) from what Ive seen only about 10% will sail right thru without being hit with major side effects, nausea, constipation or diarrhea, etc. About 80% start to have a hard time during the end of week 3/beginning of week 4 and 10% will struggle almost right from the start of rads and have a heck of a hard time.

The complete blood test including thyroid is so you and your doctors know what is normal for you. During treatments your bodys immune system can take a huge hit with your white counts being very low. This mean avoiding crowds, anyone sick and washing your hands and using hand sanitizer all the time. Its impossible to get these numbers correct after you have started rads especially if having chemo. Most patients thyroid will be effected by rads (scatter radiation). This means the patient must take a tiny pill everyday forever. Its not a big deal, it gets monitored at least yearlty and the medication gets adjusted. Baseline is your normal numbers for what is normal for you.

Did you get the fluoride trays started at the dentist? This is something else that very important! This is coming from someone who lost her teeth from rad damage and I used the trays.

When first told of a cancer diagnosis, we all go thru a state of shock. Being forced to face our own mortality is NOT easy to accept. Changing into someone who needs help and isnt well can be very hard on someone who is normally very active. Its almost like the stages of grief what cancer patients go thru until they finally hit accept. Best thing you can do is to read and educate yourself about your illness so you an be a strong advocate for yourself. This will NOT be easy so try to get everything ready as much as you can.

PS... Ive sent you a private message (PM) to help you quickly learn the ins and outs of the forum and make navigating it much easier. Please read thru the link so you are able to add your signature. It really is an important toll to help us better help you by knowing your basic history with OC. Click on the tiny flashing envelope next to the my stuff tab.

Thank you!!!



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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