Today I went to have my second Covid screening so I can see my oral surgeon on Tuesday. I found a lesion on the side of my tongue and having felt so lucky to have had 10 years without a real concern for the cancer returning...well I am beside myself. My husband is very supportive but he is also very sure it is "nothing". I am not in that camp having felt other symptoms prior to the discovery like increased tiredness, cough, aching around my ear and jaw.
My previous bout was BOT stage IV, 2 N. I had the 35 RADs and 2 Cisplatin. I was wrecked by the end of it all but actually was able to return to my classroom after 5 weeks of recovery to finish out the school year.
My questions to the group are about treatment. What am I looking at? I am worried about surgery ( I was unable to have surgery the last go round) and the healing concerns as well as the complications the corona world is going to impose on me and my family. I really do not think I can do this on my own without support if I have to be in the hospital without any family. Well, I don't want to go on but having been here before I know this group will give me educated advice that I can mull over. Thanks so much!
This must be incredibly scary. Especially as you know what to expect if it is cancer. You know it could be a million and one things other than cancer, but it doesn't stop you worrying. Covid doesn't help either. However you know what to do to keep yourself as safe as possible. As do the hospital team.
I had stage IV N2 SCC tongue cancer last year, and I had a total glossectomy, 33 radiotherapy, 2 cisplatin and 13 pembrolizumab (immunotherapy) The surgery is the easiest part. Learning to speak takes time, but it can be done with patience, time and practise. Learning to eat is a lot longer to do and is definitely the path that leads to tears, frustration, anger and thoughts of "I'll never eat again" or "What's the point". However, 1 year on and I'm starting to eat real solid food. Sausages, steak, breaded chicken, tomato, cucumber, cheese etc are all what I have recently added to my diet that have not been made into soup or a sauce. You do drink an awful lot of water with your food, but on the plus side, it helps your kidneys.
As for support, physical support may be tougher, but virtual support is most definitely easy to do. You have so many avenues for people to keep in contact with you if you do have to stay. We're here for you too.
Let's see what your appointment comes out as, first of all, before planning hospital conversations.
Thank you so much for your thoughtful reply. It does make a difference to know I can trust in your experiences and accomplishments. I should be more involved with the group. You really made a difference with your reply. I will hope for the best. My team is always about quality of life and often comment on my thoughts of recurrence as not likely. I am hoping they are right. It is true, knowing the possibilities is taking the dread to a much higher level than the first go round.
You are amazing having surmounted so much since your diagnosis and treatment.
Be in touch,
I hear you. I was terrified when they found a tiny lump in my neck after my first CT scan. I worried at the biopsy. I didn't stop worrying until they said "it's nothing to worry about. It's tiny piece of necrotic flesh, probably caused by radiotherapy. We'll keep an eye on it and let us know if something changes" It's not grown or changed in 8 months.
I am very happy to hear you have been good after 8 months.
It seems to me a leap of faith when there is something unusual or of notice, and then we are asked to not worry about it.
I did see the oral surgeon this morning and although it is not an all clear -I am in a holding pattern of sorts. The decision is to do some oral care including mouthwash with the baking soda/salt regimen 4-6 times a day and wear a mouthguard at night. He feels it may be a result of friction between molar and tongue. That being said, he wants me to come back in 6 weeks to have it checked and of course if there are any other changes (bigger, redder, etc.) I need to call.
I have experienced changes in my T3 T4 levels so I I have been prescribed a new level of meds and will be having a blood draw at about the time I am going in for the recheck. I guess it may help to paint a picture of sorts if things are not normal/corrected, normal for me, anyway.
I will be checking back in more regularly.
Stay safe and be well!
Well that sounds good. A check up in 6 weeks is promising. Hopefully it's nothing more than your teeth rubbing.
Thank you for updating us and I'm so glad it isn't anything sinister.
Thank you for your comments. It's not an easy journey, that's for sure. I had a choking incident on Saturday. We had my sister, my niece and a couple over for a social distanced BBQ. All was going great but I'm not used to having people around when I'm eating. We were talking and I wasn't concentrating on chewing as much as I should have been. Took a sip of water and realised too late that there was too much in my mouth. The water filtered through and the food impacted in my throat. It was too far for me to pull out so my husband had to give me the Heimlich. He's had a bit of real life practise with me over the last 8 months. We've got it down to a fine art. I clap my hands at him for attention, we go somewhere where I can hold onto something and he does the Heimlich. It's all over in less than 30 seconds. Our friends were like "What just happened" followed by "Jeeze are you OK. You didn't panic!!"
Good on you and your husband! You’re right in that oral cancer is the kind of disease that throws us — patients and caregivers — into all kinds of unexpected situations. We just have to learn to cope.
I am glad you have a strategy for when swallowing is not happening. I have had assorted experiences although doing more like a self Heimlich over the sink to get to breathing again. The best response is not to panic. It is good you have a strategy. I remember being back to work and I was thinking I could manage eating with others...take a stab at it. Well, not such a great idea. I had to move quickly and get to a trash can. I was feeling comfortable and not paying attention to what I was chewing. There was so much going on in the room, no one even noticed. It was very surprising to me. For the most part, I choose to eat on my own when I am in mixed company not family. I take a very long time to eat so it is just as well. I definitely do not want to be lured into hurrying. Crazy thing, as kids our house was all about eating quickly and being done.
It is hard for our caregivers to experience these types of moments yet they are the most invested in keeping us with them and making progress in our new normal. I do count myself fortunate to have him looking out for me. I am glad you and your husband are a team and he is there for you.
I hope you have a great day! I will be back soon.
It is just over two weeks until I go back to have the questionable area re-examined. I am at this point just reviewing in my mind what I may possibly hear from my doctor which is rather unproductive. I have a persistent cough now and it is hard not to think, hmm is that like it was before my first diagnosis? I can hardly remember but I do know it could be a totally different experience from the first, so who knows.
I am so in awe of the many participants here on these forums who maintain a positive outlook and are examples to so many of courage and persistence. It is what keeps me thinking it can turn out ok, even a second time around.
Thank you for your willingness to share and to support.
September 29th and after passing a Covid 19 test for third time, I was able to see ...thought I was going to see the head of my Head and Neck team but he was ill. He is getting up there and I honestly don't know what to do without him. I have every confidence in Dr. Ridge.
Stephen Donnelly who works closely with Dr. Ridge did a biopsy today on my tongue. The area was not easily accessible and it was like trying to capture a wet fish to get to the suspicious area. It is not the area of my previous cancer. In fact it is the opposite side of my throat but still a tongue issue.
No idea how this is going to develop but the tissue was sent off and in a week to 10 days I hope to know what it is I am up against. In the meantime, I am learning to accept and carry on. What else is there to do? Live and live, and that is it. Just going to count my blessings, and all the time I have been able to enjoy. Thanks for being there.
I've got everything crossed for you
Dizz and NonaChris,
I learned a lot reading this thread. Thank you both for sharing.
A comment on C19 and hospitals. My surgery for SCC on my tongue (glossectomy and neck dissection) was April 1 2020 in the midst of the first wave in Southern California. At first, I thought it would be really hard on me with no loved ones there. But, over a couple days, I realized it was much harder on my wife. The not knowing is brutal and the mind plays games. So, soon as I could speak with the Passy-Muir device, we did taped videos and soon phone calls. The nurses were angels. I mean it. We had some of the most amazing experiences (choking, suctioning, laughing, trying to get the 15 wires and cables out of my way to use a bathroom). I think back, and honestly, my recovery went better. I was absolutely focused on my recovery and getting home to my family.
Hoping this whole thing is a simple fix but just in case, wanted you to know the hospital stay was not that bad.
Dizz and Nels,
Your positive outlooks and shared experiences are so appreciated.
I have moved forward, well not too quickly, my surgeon who I have been followed by for the past 9 years and who is to do my surgery, threw his back out. Ugh! I want him to do the surgery, he knows me and I know him well. He has also said he wants to do my surgery so I am willing to hold on.
I found out via biopsy, CT, and exam that the cancer on my tongue is at a stage I and the hopes for the surgery is that it does not show anything that is more concerning. I understand the CT is not very good at picking up the depth of the tongue or even a good view since I have metal (fillings) in my mouth. It gets in the way. Another good reason to take care of your teeth.
There is conversation about the nodes because again they are not as visible since I have a thinner neck. Apparently they are also difficult to see on the scan.
So, I know more but a bit muddled. My surgery is set for Thursday, October 22. It may get moved up but not unless my doctor's back situation is remedied and I have to do the 2 Covid tests and pre-admission assortment of requirements.
I am a Kindergarten teacher so this is a huge part of my anxiety. I am teaching virtually currently and preparing for my leave. I know things could be very different after my recovery, they may be back in the classroom.
My hopes that out of all the negatives I can experience the positives you have both shared here is this blog. I have every hope that I will be able to negotiate the surgery and recovery with success. I very much appreciate your willingness to share and support me.
Feel free to share specifics about your surgery and after care, recovery. I am hopeful it will give me strength and knowledge to go into this a stronger patient.
Trust in your medical team is a wonderful feeling. Hope it all works and I would probably wait too especially knowing stage I. Oct 22 is not far away. As for specific notes from surgery and recovery, I have a couple lists and spreadsheets I put together. Happy to share them. Will pull them out from home later and send. May be easier to do thru private message.
BTW, being and Kindergarten teacher makes you an angel in my eyes. What a wonderful way to help influence our future.
Keeping you in my thoughts for a successful treatment.
Not long to go. I'm so glad you don't have to wait too long.
Things that helped me in hospital were a small (A4) whiteboard and several whiteboard pens so that I could communicate. I took a lady shaver so I could shave my legs whilst I was there. It just made me feel clean even though I couldn't shower or wash my hair. Moisturiser for you body and hand-cream. I gave myself gentle hand and foot massages, which helped make me feel comfortable.
I took comfy slippers, a shawl, loose nightwear, mobile phone and charger. I did take a couple of books but I found I couldn't concentrate on them. I did take a book of word searches though. It was nice to do them as you don't need to concentrate too much.
I had received loads of cards from friends, so I took a couple with me to make me smile and brighten up the room.
I'll be thinking of you on the day xx