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Hello #200019
04-05-2020 01:09 AM
04-05-2020 01:09 AM
Joined: Apr 2020
Posts: 1
S
SusanBJ Offline OP
Member
SusanBJ  Offline OP
Member
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Joined: Apr 2020
Posts: 1
Hello everyone,
I am a 58 year old female living in North Carolina. I have never smoked, chewed, or drank alcohol and my last PAP was HPV negative. I have had leukoplakia for the last 5 years, worse off and on. In the last 6 months it has been really painful and I developed a lesion that looked like an ulcer on my right lateral tongue. After finally getting a referral and in to see an oral surgeon, he biopsied the lesion and I was diagnosed with SCC. I don't know the staging yet, I have a CT scan scheduled for 5 days from now. The physician thinks it is stage 1-2. I have been doing some reading and it seems that pain radiating into the ear is often indicative of the cancer having spread. I have had a lot of pain in my tongue and it does radiate up in to my ear, not always but often. Is that the experience of most, that pain into the ear means the cancer has spread? I'm also very concerned as the problems with the Corona virus are escalating and the hospital that the surgery would be done in is not a stand alone hospital for cancer. It seems very risky to me to get admitted and have surgery with the risk of getting infected with Covid-19. It hurts like heck to cough or sneeze now. I can't imagine having Covid after surgery! I think the surgeon is really good but I'm wondering if I should check out a stand alone cancer hospital as an alternative. It's not like I can just wait the many months it is going to take to get this virus under control in the US. Do you all have any advice or thoughts for me? Thanks for your time! I'm so glad I found this forum.


SCC tongue Stage T2 N0 with perineural invasion
Partial right glossectomy and right neck dissection 4/20/2020
Awaiting radiation therapy June 2020
Re: Hello [Re: SusanBJ] #200021
04-05-2020 04:22 AM
04-05-2020 04:22 AM
Joined: Feb 2015
Posts: 92
Boston suburb
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tlc356 Offline
Supporting Member (50+ posts)
tlc356  Offline
Supporting Member (50+ posts)
T

Joined: Feb 2015
Posts: 92
Boston suburb
I've always believed that we're better off in a place that is dedicated to our disease and that has even greater meaning right now.

My experience with leukoplakia turning to cancer is similar to yours.


SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15

TLC356
Re: Hello [Re: SusanBJ] #200022
04-05-2020 05:13 AM
04-05-2020 05:13 AM
Joined: Jun 2007
Posts: 10,499
PA
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ChristineB Offline
Administrator, Director of Patient Support Services
ChristineB  Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Joined: Jun 2007
Posts: 10,499
PA
Welcome to OCF, Susan! You've found the best online resource to help you with info and support for your recent oral cancer (OC) diagnosis. We have been thru this ourselves as patients or caregivers, we can understand what you are going thru. Being recently diagnosed can be a very scary time. So much to learn and too often not enough info that really helps. I remember when I first got diagnosed as having a disease I never knew existed, all the info I found was about lung, breast or testicular cancer. Luckily I found OCF fairly quickly after my diagnosis. I was instantly embraced by total strangers who helped me thru some of the hardest times of my life. Sadly, many of these people are no longer with us and are missed every day. On the bright side, theres even more OCF members I am still in touch with 13 years later. These great people adopted me and made such a tremendous, positive impact on my life I know I wouldnt have survived without them.

You mentioned reading about ear pain happening when cancer has spread. With OC, this is not exactly how that works. Some patients have pain right from the start while other patients do not. Its different for every single person. I did not encounter pain with any of my 3 OC diagnosis. On the main OCF site (link is below) you can read thru hundreds of correct medical info from a highly respected source and learn about being diagnosed and symptoms that vary greatly. Comparing OC patients that seem similar isnt an equal comparison. Even when theres 2 patients who on paper seem to be identical, they're still individuals who will react to meds, treatments, procedures, etc in their own unique way.

When reading online, make sure the website you're using provides factual, up to date info. Unfortunately a great many sites accept advertisements so they promote those products to readers instead of what patients have actually used and found helpful regardless of if its advertised. Even worse are social media and/or almost all health related online message boards/public forums! They are not monitored so its an anything goes site full of false cures that take advantage of sick people at their lowest points. While using OCF, rest assured factual, only science based info is provided. We are Health on the Net (HON) certified, which is a high honor to achieve. OCF is one of the very few online cancer related health organizations able to consistently meet the HON's strict criteria. Theres also the distinction of winning Great Nonprofits year after year and a long list of other accolades over the years. Another important thing that sets OCF apart is the public forum is monitored 24/7/365 to protect our members from scams promoting fake cures and sales attempts from unscrupulous people/companies. Many sites will say they're monitored yet after reading a few posts of blatantly incorrect medical info thats posted on their site for weeks, months sometimes years before it is noticed by those sites "monitors".

As far as the Coronavirus goes, this is completely uncharted territory for everyone. The pandemic seems like it must eventually wreck havoc on the medical community but thats a logical conclusion but its still just my guess. None of us know or can predict whats coming next with the pandemic. Just remember cancer patients are treated by oncologists ... they're cancer specialists not dealing with infectious diseases like the Corona. The best thing all OC patients (or for that matter all patients regardless of their ailments) going thru OC during the pandemic is to depend on their medical professionals to answer their questions and determine whats in the best interest of their patients. As I just mentioned to another new member, this is a perfect time to seek out a second opinion preferably at a comprehensive cancer center (CCC) and to read about OC. Im reposting the links I gave to the other member as well. By learning about OC it will help to make the patient a strong advocate for themselves. Im not sure if thats what you are referring to when saying a stand alone cancer hospital??? Hopefully you are going to only reputable places and not "for profit" "hospitals" (usually heavily advertised on tv) who patient shop (choosing what cases they will take to skew their healed and/or deceased patient numbers) the cases they take. Sadly those types of facilities care about their numbers, bottom line and every other business type things before their patients well being.

Hang in there!!! If possible focus on what is within your control and stay super busy. Staying busy helps to distract from excessive worrying, at least it did for me. Reading a good book, starting a new hobby, reconnecting with long lost friends/family members are all positive options everyone can do. I used to clean out dresser drawers, then I moved on to do all the closets. By the time I ran out of things to reorganize, I was very happy to see a noticeable difference. By focusing on reorganizing it kept me too busy to worry about things I had no control over. Maybe this could be something you would want to try?

Feel free to ask questions and we will do our best to help you. Have a great day smile

Main OCF Site, Understanding

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

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