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#201477 07-15-2022 11:01 AM
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Nancy H Offline OP
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In 2001 I was diagnosed with Squamous cell carcinoma on the right side tip of my tongue. I had It removed and 30 radiation treatments just on my neck (lymph nodes).
I soon forgot about it and didn't even feel like I'd had cancer.

In 2016 I was diagnosed with invasive carcinoma in my right breast, I had a lumpectomy (actually two as they didn't get it all), and 30 radiation treatments. This time I knew I had cancer but was still feeling very positive about the outcome.

In 2018, I noticed an indention on my tongue near the scar from my previous surgery. So,17 years later, there I was with tongue cancer again. I believe it's considered a new occurrence rather than a re-occurrence. I had about 1/4 to 1/3 of my tongue removed. This time I had 30 strong radiation treatments on my tongue and mouth. I had severe mouth sores, lost 36 lbs and was threatened with a feeding tube. I wore a Fentanyl patch and used liquid lidocaine for the pain. I saw the same Oncologist I had for the breast cancer and when I was finally able to ask without crying, I asked him what my prognosis was since this was number three. He said this was a conversation he'd had more than once. He took my hand and said "We just don't know, but I can tell you, no matter what may come, we have something to help you.... New discoveries every day."

I still have what may be permanent radiation damage which affects what I can eat. Nothing mint flavored, no carbonation, nothing acidic, and nothing spicey. Did I mention I grew up on and love Mexican food :-( Also, nothing crisp or crunchy? These foods are either too rough for my tongue or burn and cause sores. It has been an adventure testing and seeing what I can and cannot tolerate. A big concern I have is that my husband and I may be left out of dinner invitations due to my food limitations. Overall, I'm doing good now. I am able to retain a good weight. I really needed to lose what I did but I don't recommend it as a diet. When I'm feeling down, I remind myself of all the other people who have worst challenges...loss of limbs, blindness, etc. Guess we all have something.

Last edited by Brian Hill; 07-16-2022 08:41 AM. Reason: Correction to name of cancer type for search access
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You certainly have had quite the challenging journey. More than most. But you seem to gave come out with a positive spin on it all and a great attitude. Thank you for sharing your story. I too have had multiple cancers and complex and debilitating side effects that are permanent from my treatments. But I have, by staying involved in helping others, tried to put my focus on them not me. It is as much to help me, as it helps to divert what could turn into personal negativity. When I feel that things are insurmountable, I am quickly reminded by someone’s email to me that it could always be worse, and I’m lucky to still be around. It’s an important lesson, one that you seem to have embraced. Wishing you no more bumps in the road, and a healthy future. B


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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Nancy H Offline OP
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Thank you Brian for your encouragement. I can't help but sometimes feel that others don't want to hear my story and so I tend to keep it to myself. And then, when I do share, I ask myself ..... do I really want to live in this place where my life is all about my having cancer? It gets confusing for me and I'm wondering if others feel this way too. Possibly a good topic for a new thread?

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Nancy

Wow, you nailed it. I am just over 2 years out from my last treatment. All scans clear - yay!

I too struggle a little with how to manage this experience socially. I tend to hold back my cancer experience with others unless they seem interested. When that opportunity is right, I see the impact. I try to share in pieces and then repeat that I am an open book if they want to know more. Everyone has their own take on this stuff. Some of my own brothers don't know the deepest details and don't want to know and some of them were deeply curious and I shared everything.

Thanks for sharing. Stay safe and keep the faith.

Nels


OC thriver, Tongue Stage IV, diag 3/12/20, surg 4/1/20, RT compltd 7/8/20
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Nice to meet you, Nancy. I have a strong connection to your story. 3 times as well...one cancer in situ of the cervix...1984. Felt great, forgot all about it. 2011 diagnosed with Stage IV SCC, 2 nodes, Base of Tongue. HPV+ All I can think is bad choices and 25 + years later at 51 I was broad sided with the diagnosis. Having a younger sister who died from Breast Cancer at 38 I was well aware of my genetic mutation which my sister's struggle brought to my attention. She was tested at Creighton University. Five girls and my mother, 4 out of 6 are positive for BRCA 2. So, I was looking to deal with Breast cancer was not thinking tongue at all. Made it through Chemo (Cisplatin, 2 rounds). 35 rads and although I lost a lot of weight I too, skirted the dreaded feeding tube.
2020, certainly feeling like I was out of the woods I found a bumpy, rough area on the right side of my tongue. I was sent home from my initial visit with my Oral surgeon at the end of September with a recommendation that I was suffering from bruxism. October 23, day before my 61st birthday I had a Partial Glossectomy. On Dec.4, I then followed with a neck dissection due to depth and size of the tumor.
I do applaud your optimism and understanding that we all have our unique circumstances but then I catch myself when I have even a sniffle or an irritating cough thinking is this something I should be more concerned about?
It was shared with me as well, "...we don't know, bad luck." But I do very much appreciate your doctor's assurance, "no matter what may come, we have something to help you.... New discoveries every day." I found myself breathing a little sigh of relief after reading those words.
Thank you for your entry and for sharing your experience.


63 years old
Nona to Alora, Emery, Ilyana, Harper, Nolan, & Rory. Yogini since 2012. Namaste.

Diagnosed 10/5/20 Oral Cancer/ RT side of tongue SCC Stage I Partial Glossectomy 10/23/20 Right Neck Dissection 12/4/20 Clear Nodes
BOT SCC 1/18/11 Stage IV N3 M0 HPV+ Port2/18/11
Treatment start 2/22
CISplatin 2rnds, Rads:35 treatments
July 12 doctors' deemed me cancer free-port out July 18.
Non-smoker, was a light-drinker No drinking since diagnosis

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