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#200328 08-09-2020 12:14 PM
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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!


61 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
Joined: Jun 2019
Posts: 239
"OCF across the pond"
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Hi NonaChris,

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.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Joined: Jan 2011
Posts: 46
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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,
NonaChris


61 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
Joined: Jun 2019
Posts: 239
"OCF across the pond"
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Posts: 239
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.


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Joined: Jan 2011
Posts: 46
Likes: 1
Contributing Member (25+ posts)
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Joined: Jan 2011
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I am very happy to hear you have been good after 8 months. wink 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!
NonaChris


61 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
Joined: Jun 2019
Posts: 239
"OCF across the pond"
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Joined: Jun 2019
Posts: 239
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!!"


F 39 x-smoker no alcohol
05/20/19 T4aN1/N2bM0 SCC a whopper of a tumour at 8cm long & 4cm wide
Pembro pre & post surgery
RIG
Glossectomy ND RFFR 08/13/19
RT x33
2x cispltin
So far, no evidence of disease
Now an author of a recipe book for mouth cancer patients
Joined: Oct 2012
Posts: 1,273
Likes: 5
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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.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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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.

Last edited by NonaChris; 08-14-2020 04:53 AM. Reason: Wanted to add a closing sentence...

61 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
Joined: Jan 2011
Posts: 46
Likes: 1
Contributing Member (25+ posts)
OP Offline
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Joined: Jan 2011
Posts: 46
Likes: 1
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.
NonaChris


61 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
Joined: Jan 2011
Posts: 46
Likes: 1
Contributing Member (25+ posts)
OP Offline
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Joined: Jan 2011
Posts: 46
Likes: 1
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.


61 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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