Hello all. My name is Tara, I’m a 44-year old female (almost 45 this month!). I am from and live in the U.S. I was diagnosed with base of tongue cancer in late-April 2023. I had a 2.4 cm tumor on the right side/base of tongue, with metastasis to one lymph node on the right side of my neck. HPV Positive, P16. It’s a long-story of how I arrived at my diagnosis, but I’m very thankful to have received treatment right away.
Let me just say that I have been following this discussion forum for many months, hoping I would be able to one day chat with you all. I have read and followed everyone’s comments and updates, along with your positive support and encouragement to so many! God bless everyone here! You have helped me through many dark days. I hope my story here can help even just one person.
I have a wonderful oncology team here. I started my treatment right away, June 12, 2023. Surgery wasn’t really an option. Because of lymph node involvement, I was prescribed 35 radiotherapies and 3 rounds of chemotherapy (intended to have Cisplatin). A few days before starting, I was informed there was a massive shortage of Cisplatin, and they had none to give me! Whew. So scary. I ended up receiving Carboplatin infusions for 4 Days during chemo weeks, which were every 21 days. Additionally, I had to wear a chemo ball of 5 FU (Flouracil) for 24 hours a day, on those same days/cycle as the Carboplatin. Treatment lasted 7 weeks. I finished every single treatment. I did something called cold-capping, which helped preserve most of my hair. I’m very thankful. A ton of it burned off with radiation, but it’s slowly growing back.
I was so scared when I started, but once I got in my routine, I just kept determined to get it over with. It is a daunting treatment. I had to take my anxiety meds every day when going on the table. I managed to keep my calories up as instructed, through eating/swallowing on my own, no feeding tube. It was awful, but I was inspired by Hazel’s advice that food is fuel. She is right, and so many others here provided such great advice. I managed on very few pain meds, a liquid codeine, but really only used it weeks 4-7, and sporadically at that. I did fine on just Tylenol for awhile, but I knew I had the pain meds if I needed them. It is so important to stay on top of the pain. And the nausea! I know that this is just my experience, it is so very painful and my doctors were ready to prescribe anything I needed at any time. I was pretty padded (overweight) when I first started, and I had tons of inflammation. I lost 36 pounds and I’m okay, Back to my baseline weight before getting sick (started feeling sick in 2022).
The first 3 months after treatment were extremely difficult, I could barely talk, eat, or swallow. The mucous production was horrific! For weeks! I wasn’t ready for that. The fatigue is crushing. I managed to go back to work just 6 weeks after treatment. Here in the US, our medical leave is only 3 months, which I started when I started treatment. Your job is only legally protected here for that time. And it’s unpaid unless you have personal time built up or your employer pays you. Some states offer a portion of pay while on leave, but mine does not. Awful! I work for a wonderful employer who has really worked with me to provide accommodations. Right now I’m only working 32 hours a week, down from 35. I’m very tired.
I had a PET scan 8 weeks post-treatment. It showed a hot spot on the left side of my neck (I did not have cancer there before treatment). But, all of the cancer that was treated on the right was totally gone! Praise God. Needless to say, i was happy, but also devastated about the hotspots. However, I remember Dani saying that inflammation can cause hot spots. I was immediately sent to my ENT. He did not see anything abnormal. I had a CT scan 4 weeks after that. No cancer!!! Just inflammation, and it’s decreasing. I’m so thankful!!
I started feeling better pretty good around November. However, I’m learning this recovery is not linear. I’ve had a lot of ups and downs since December. I’ve developed oral thrush I think 3 times since last summer, it’s no fun at all. You guys are right, only Fluconazole works! Currently getting over my third infection. But, developed a pesky UTI recently as well, and on some strong antibiotics, which can lead Back to more thrush! Ugh.
I resumed eating a lot of things that can be painful, coffee, breads, (some) chocolate. No tomatoes and no fruits, they still burn. If I eat things I shouldn’t, my throat is sore. I get sore throat in general time to time. The ENT says that isn’t abnormal, but I would be lying if I said it doesn’t scare me. My next scan isn’t until May. The doctors informed me that they will need to start checking my lungs on the next scan, apparently there is a low risk for lung cancer based on my treatment. I really do wonder if what I’m feeling sometimes is all normal, but my oncology team is available to me anytime if needed. They don’t seem worried.
Overall, I feel okay, not great, but not sick. I think I thought I’d be back to normal sooner than later, but more than six months out, I’m so so tired. Working, I’m sure contributes to that.
I married my husband in a very small ceremony in late 2022 before I was diagnosed. We planned a very large wedding for August 2023, but clearly that didn’t work out. We are re-scheduled to have our big wedding in July of this year. Again, just so so thankful.
I got all of the side effects we read about on here. I felt like mine were so intense. The mouth sores, dry mouth, thrush, crazy sore throat about week four, and ongoing constipation. The nurses are amazing and provided me with everything they could to make me as comfortable as possible. I now have neck fibrosis snd lymphedema, they say it’s permanent. I can feel it every day. I go to physical therapy weekly until I get it more managed.
I don’t know what the future brings, for now, I’m enjoying the results of my last scan. I can’t live in the worry of what will happen at the next scan. Im so grateful just to see the sun shining each day. I have a good support system and hope sometime I can give Back in a way that will help another person.
This group has been so amazing, I can’t thank you enough. I only wish I could’ve posted sooner, but there’s just been a lot going on.
Thank you everyone! I wish you all the best in each of your journeys. It’s very difficult, but it does get better. You can get your life back. Just trust the process. It sounds like you have an amazing medical system in the UK! Best wishes-Tara
Tara
Oh my! thank you for posting your update. It's so honest and encouraging.
This disease and its treatment is indeed a roller coaster with our bodies and our minds. Fluorouracil is absolute rubbish so well done on getting through that. Did you have to cold cap for four days? sorry....I can't help but ask.
It's going to be a while before you're really fit and well but crack on and you will get there. I posted my five years elsewhere in the forum. It's a day I never thought I'd see at the beginning, but here I am alive and well
Best wishes for your upcoming wedding party. I think sending us a picture will be in order, eh?
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
https://todaymycoffeetasteslikechristmasincostarica.com
