Tonsil cancer w with lymph node involvement
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Mark,
I was able to maintain a weak swallow, during and after treatment, with dificulty in the oropharyngeal phase of swallowing. over the years I developed scar tissue which exasperated that problem, causing me to aspirate small food particles that cause pneumonia. I also have a hard time maintaining weight. I recently went back on the feeding tube, and will likely keep one for the duration of my life. I have had quite a bit of dental problems, due to dry mouth and radiation caries. Long story short I am still here, with people I love, getting time with grandkids, so my problems seem minor.
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Hello again, I was quiet a bit but want to update on my present status. I completed treatment on 15/09/22. I had some side effects and still got them but I would say they are minor and not complicating my life at all. I had MRI scan on 06/12/22 but haven't got results yet. On 11/12/22 I came back to my work and on Tuesday 10/01/23 I will come back home. I am working abroad. I feel really fine. On 13/01/22 I got scheduled appointment with my doctor to advise me what are the results of MRI scan. I hope all will be good. The only side effects what I got is mainly dry mouth - I just drink a lot of water and I get used to it. When I eat I need to drink also more water then in the past. From two weeks time I started to feel left foot numbness but it is really very minor and I can feel it only when I touch my foot by hand. I read that it could be side effect from Cisplatin. Apart those two things I feel completely normally, my taste came back, blood test results are good within limits, I haven't got sore throat or anything else. I started to go to gym again and my life slowly coming back to normality. I hope to receive good news on 13/01/22. Then next will PET scan in March.
I wish all the best to everybody!
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Thanks, PKDTV for checking back in and letting us know your status, and giving us all an update on your situation. I am very happy for you that things are going so well and that you are getting back to a regular routine. Also is a Blessing that you have so few side effects and that you are able to take them in stride. You are finding your new normal, almost like the old normal.
Wishing You the Best
Take Care God Bless-Russ
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Hello to everybody,
I will have PET scan at the beginning of March. My MRI scan from December showed, that tumor in tonsil has been completely destroyed and tonsil with its surrounding areas are all clear. MRI shown also that my two lymph nodes are still enlarged little bit, one of them is 11x9mm and second one is 11x6mm. It wasn't possible to evaluate what was exact status of lymph nodes that time. I was advised by my doctor to not worry and make PET scan at the beginning of March. I can feel these lymph nodes under mu finger, but I need to move my head at certain direction and when I put fingers on my neck at the precise position, then I am able to feel them. I am sure they are smaller then in December when I had this MRI scan. I got question, has anybody got similar experience with these lymph nodes? Primary tumor destroyed but still something left in lymph nodes. Thanks.
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Hello again PKDTV, glad to hear an update from you. First off I want to celebrate with you that the tumor in the tonsil has been completely destroyed and the tonsil with its surrounding areas are all clear. You can't beat news like that, Ye-HaH. I do not share a similar situation but I would like to comment and maybe ask a question. Many times when lymph nodes are involved they will do a radical neck dissection to remove them. But in your case, they did not. Did your doctor treat you I assume that the radiation was going to kill the cancer in the tonsil and lymph nodes also. I believe that the lymph nodes are still affected by radiation-caused swelling and are still slightly enlarged from the treatment and will eventually shrink back to normal size. You say you have to put your head in just the right position and then place your fingers in just the right position to feel them. Then I think you are looking for trouble. I say quit searching for them and searching for trouble and trust in your treatment and your doctor's advice to not worry. Trust in your recent MRI. I am also assuming the lymph nodes in question are close to the tonsil area and were probably seen in the MRI as being clear also hence your doctor's recommendation not to worry. They must have been in the MRI for them to give you an exact measurement of size and measurement. Also, your doctor has you covered with an upcoming PET Scan soon as another follow-up to be sure your cancer is eradicated and if there does happen to be any issue it will show on a PET in March. So I celebrate your treatment success and pray to God concerning the upcoming PET in march that it is clear and clean with no cancer seen and soon they will give you an official nod of NED (No Evidence Of Disease). Your doctor said not to worry, take his advice, and go enjoy life and count your Blessings.
Wishing You the Best
Take care, God Bless-Russ
Celebrate--
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Thank you wbcgaruss,
I really appreciate your support, it means a lot to me. I agree with everything what you have said. My doctor advised me that in my case best treatment will be chemo and radiation without neck dissection. She said, this should kill all cancer cells. I am not doctor, so I just trusted her and agreed for that treatment. You are right that these lymph nodes are very close to the tonsil, on the same side. And yes I agree, maybe I am looking for troubles, because I did all these things with my head and neck to find those lymph nodes. I am fully aware of this but when it is getting closer and closer to my PET scan, I am just thinking about it more and more. I am living normal life, I am at work right now (tomorrow coming back home, I am working abroad, in fact I am seaman working on the ship), I feel completely normal and I can say that all my side effects are gone, I haven't got anything at present, even dry mouth gone. Despite all these good news I am still thinking about PET scan and about MRI scan what I had in December. When I had MRI scan, results of it were sent to my doctor and when I visit her in January she explained to me what was the result of MRI and gave me a copy with results and comments. She said that results are very good as primary tumor is destroyed. My doctor said, that from her experience a lot of patients got similar situation to me, so at the first MRI scan lymph nodes are still not clear to evaluate them with certainty but on PET scan everything is ok. She said that in worst case scenario, lymph nodes will be removed so I presume she meant neck dissection. I never heard and read about neck dissection after the treatment in case of tonsil cancer. On document from MRI scan I can read that it is not possible to evaluate status of lymph nodes at present, in one of them it is possible restriction of water diffusion but it is not certain due to artifacts in DWI sequence (whatever it means). There are also measurements of lymph nodes and information that residual process cannot be excluded at this moment. Anyway, I need to wait and see what PET scan will bring to me.
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PKDTV, I know exactly what you are talking about relating to the scans. No Matter how positive we feel there is always that anxiety when a scan is coming up.
You like the rest of us you have what we call "Scanxiety".
Below is a search link from this forum covering the subject and as you can well see this subject is well covered and has bee discussed heavily--
And here is a great link covering the emotions of cancer--
Take care, God Bless-Russ
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I have received PET scan results 15 minutes ago - it is all CLEAR, no cancer!!!!! I am so happy, all is clear in my body, they checked everything. Lymph nodes mentioned by me in my earlier posts are fine and in fact they are not enlarged. I am not able to express how happy I am now. BIG THANK YOU to all of YOU here, thank you very much Russ. I am at work now, so I will see my doctor at the beginning of April and will ask her when I need to do next scan. THANK YOU ONCE AGAIN!!!!
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Well, PKDTV congratulations on a clear scan. I can't think of any better news than that. What a Blessing to receive. There is nothing sweeter than the pronouncement of NED (No Evidence of Disease). So glad the lymph nodes you were concerned about checked out as a non-issue. Glad you are at work and back to regular living again.
Wishing You the Best
May God continue to Bless you.
Take Care, God Bless-Russ
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Alex, welcome to the CSN H&N discussion board. Yes we do, many of us have an assortment of leftovers from treatment in varying levels and intensities from very minimal to problematic.
Alex, you are very early out of treatment at 3 weeks. Many of the problems associated with H&N cancer treatment have the possibility to be less severe as time goes on. I would guesstimate that up to a year or a year and a half, you can still have the possibility of changes. Mostly it gets better. Hopefully, you will see improvement, just be patient. Recovery from cancer treatment is measured in weeks and months not days and weeks.
Take Care, God Bless-Russ
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Hey Alex,
In 2 weeks will be 1 year anniversary of my last radiation treatment. Here's what I experienced recovering from the treatment. I had super dry mouth for 9-10 months.
1-2 sentences into a conversation, if I did anything even mildly strenuous, I went completely dry...completely. Had to carry a water bottle around. I was meticulous to take care of my dental hygiene during this time. Rinsed my mouth repeatedly after eating solid food (no saliva to dislodge food particles), never miss a daily floss. Get a water flosser. But by around month 10, it has gotten better. Still very dry when I eat dry food like bread, chips, crackers, etc. But there is improvement, albeit VERY slowly.
2-Taste: It gets better but recovery is also slow. It was several weeks before everything quit tasting like salty, metal paste. Then I could taste nothing, which was better. Then you start getting "whisp's" of flavor, and it gradually increases. It wasn't spicy things that I first started tasting either. The very first food I actually enjoyed were deviled eggs. Eggs?! But it was so nice to taste food again. Some things I began tasting more than others. Cinnamon and sweets were sooo good when I could taste little else. I have about 80% of my taste back now so I'm eating normally again now for the first time in a year. Some things I still can't taste but that is getting rarer. Some things now have an "off" flavor to them.
To keep from losing too much weight, I got Boost VHC on Amazon so I could be sure to meet my 2000 calorie a day recommendation. They have 520 calories apiece. 4 of those a day sustained me for quite awhile when I couldn't force myself to eat.
My energy level was also terrible post treatment. I still get tired after working in the yard, etc but not nearly as bad as 6 months ago.
To summarize, you do recover but it is an excruciatingly slow process. Just keep the calories going in and take care of your teeth.
Good Luck Brother!
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Hi Mark & Russ!
are you both living in US also like me?
Thanks so much for sharing your information post-treatment.
The drymouth is what bothers me the most like Mark said. The therapy person told me be patient and it will be much better later
like both of you said. Yes, the recovery is slow but will be better for sure.
Did both of you or everybody have dental procedure or tooth extraction? if so, how complicated it is since we all when thru the radiation treament?
Also, how is the regular check up with the Doctor go for everybody in the first two-years?
I hope everybody is doing well for the first two years.
Thank so much for sharing your experiences post treaments.
Alex
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Hello, Alex.
I do live in the United States.
Your dry mouth should get better but there is no guarantee.
I would estimate possible improvement within a year to a year and a half after treatment. Beyond that time frame, it is much less likely.
Every case and treatment is different and our bodies are all different.
So some on here got a lot of their saliva flow back and others not so much and many cases in between.
I hope you get a goodly amount.
As far as dental I kept my teeth up normally before cancer and saw my dentist every 6 months so previous to cancer treatment starting they wanted me to get a checkup to make sure everything was OK that was it and I needed no dental work.
As far as doctor checkups the first 2 years your doctor or care team should schedule for checkup scans and at some point they will also have you get a PET scan. Follow their directions and ask questions. They will probably want to see you regularly during the first year every 1-3 months and after that, it will stretch out to 6 months most likely. And many doctors will see you for checkups and scans for up to 5 years. It all depends on your doctor and your cancer diagnosis.
Stay positive, be vigilant to anything that seems to be out of the ordinary and if anything seems not right call your care team or doctor to run it by them, thats what they are there for to get you through this situation and beyond.
Wishing You the Best
Take Care, God Bless-Russ
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I also live in the US. Oklahoma. Since my post treatment PET scan, my follow ups have been every 2 months. The DR (Head and Neck Surgeon-with a "Fellowship" designation) runs a camera into my nose and down my throat to see if there is any cancer re-emergence. Clear so far. He said after a year, we will transition from every 2 months to every 3 months. FYI, I was part of a "study" for this particular cancer so I'm probably being more closely monitored...which is fine. (I know MD Anderson in Houston as well as the OU Cancer Center in OKC are doing it, not sure how many others.)
Good luck with your recovery!
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Hello, Mark, and thanks for weighing in on this. I am not sure what the standard is on this, actually, it probably goes on a case-by-case basis depending on your cancer, your treatment, and how you came out of treatment on the other end. Your case sounds a little unique being part of a study. Congrats on that, you are already helping others with the information about your case and recovery.
My first cancer in 2013 was throat cancer and my ENT at post-treatment was seeing me every month and scoping me each time. After the first one, he had a baseline on the radiated area. If I remember correctly the second and third months there was not much of a change but then slowly he started to see improvements every month and then I went to 2-month intervals, 3 months, etc.
Mark, I think this is a critical time and problems could arise such as possible infection or something else they want to catch it right away. So I did check the internet and found a couple of sites that explain the frequency of follow-ups and the reasons for head and neck cancer.
Care for people diagnosed with cancer does not end when active treatment has finished. Your health care team will continue to check that the cancer has not come back, manage any side effects, and monitor your overall health.
https://www.cancer.net/cancer-types/head-and-neck-cancer/follow-care
Follow-up after treatment for head and neck cancer: United Kingdom National Multidisciplinary Guidelines
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4873918/
Wishing the best to you Mark and of course, all the folks going through this.
Take Care, God Bless-Russ
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