Husband diagnosed with tonsil cancer: looking for tips and support

It’s been a challenging week for us. Our car needs repair, the dryer broke, and the dishwasher has to be replaced. We visited two hospitals to understand the status of my husband Tonsil Cancer and the other hospital for second opinion. We met with the team of the first hospital (Hospital 1) – oncology doctor radiologist, chemo doctor, and nutritionist. We asked why we did not have a test to see if the Tonsil cancer is HPV related or not, and we were told – it’s not necessary = this is HPV related (since my husband is non-smoker/non-drinker). Treatment will be standard radiation on Both Necks (70 Gy of radiation over seven weeks (35 times, 5 days= M to F), along with three cycles of chemotherapy - Cisplatin.). My husband’s left lymph node is where the tumor is and there is no tumor on the right-side lymph node. We do not understand why the right-side lymph node is included in radiation therapy for 15 minutes every day (M-F) 5 times a week. I heard doctor said its Intensity modulated radiation therapy (IMRT).
Mask will be fitted before husband starts radiation. Also, a feeding tube will be made to make sure food is provided in case of swallowing/eating issues.
We went to the other hospital (Hospital 2) for a second opinion. The surgery oncology doctor ordered an IR Biopsy Lymph node for the needle biopsy did not show HPV. The doctor wants to know if cancer is caused by HPV. A blood test was drawn for the NavDr HPV load test. We were told that if this is determined to be HPV, treatment plan will depend on this. However, 1 doctor commented that he is suspecting an HPV since the CT scan has cheese like images. We will be having this IR Biopsy Lymph node test on Wednesday this week. We met with the oncologist radiologist, and he told us treatment will be low dose radiation.
Both radiologist doctors in these 2 hospitals advise that my husband not get TORS surgery due to bleeding complications and mentioned clinical trials to support their advice.
With all this information now, we have not decided which hospital to go= except that distance/transportation will play a part on our decision. We were also told of possible side effects of hearing, swallowing and dry mouth, etc. We need to get a blood test to be ready for chemo and dental clearance.
We have no final stage of tonsil cancer yet. We were told once this is confirmed to be HPV-related, then they can stage.
My husband is not in favor of low dose radiation for he thinks the cancer will not die and he has only one chance to do this. Thanks everyone for being patient and kind. It’s a hard road ahead of us and this support group is a gift from God.

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It’s been a challenging week for us. Our car needs repair, the dryer broke, and the dishwasher has to be replaced. We visited two hospitals to understand the status of my husband Tonsil Cancer and the other hospital for second opinion. We met with the team of the first hospital (Hospital 1) – oncology doctor radiologist, chemo doctor, and nutritionist. We asked why we did not have a test to see if the Tonsil cancer is HPV related or not, and we were told – it’s not necessary = this is HPV related (since my husband is non-smoker/non-drinker). Treatment will be standard radiation on Both Necks (70 Gy of radiation over seven weeks (35 times, 5 days= M to F), along with three cycles of chemotherapy - Cisplatin.). My husband’s left lymph node is where the tumor is and there is no tumor on the right-side lymph node. We do not understand why the right-side lymph node is included in radiation therapy for 15 minutes every day (M-F) 5 times a week. I heard doctor said its Intensity modulated radiation therapy (IMRT).
Mask will be fitted before husband starts radiation. Also, a feeding tube will be made to make sure food is provided in case of swallowing/eating issues.
We went to the other hospital (Hospital 2) for a second opinion. The surgery oncology doctor ordered an IR Biopsy Lymph node for the needle biopsy did not show HPV. The doctor wants to know if cancer is caused by HPV. A blood test was drawn for the NavDr HPV load test. We were told that if this is determined to be HPV, treatment plan will depend on this. However, 1 doctor commented that he is suspecting an HPV since the CT scan has cheese like images. We will be having this IR Biopsy Lymph node test on Wednesday this week. We met with the oncologist radiologist, and he told us treatment will be low dose radiation.
Both radiologist doctors in these 2 hospitals advise that my husband not get TORS surgery due to bleeding complications and mentioned clinical trials to support their advice.
With all this information now, we have not decided which hospital to go= except that distance/transportation will play a part on our decision. We were also told of possible side effects of hearing, swallowing and dry mouth, etc. We need to get a blood test to be ready for chemo and dental clearance.
We have no final stage of tonsil cancer yet. We were told once this is confirmed to be HPV-related, then they can stage.
My husband is not in favor of low dose radiation for he thinks the cancer will not die and he has only one chance to do this. Thanks everyone for being patient and kind. It’s a hard road ahead of us and this support group is a gift from God.

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I was diagnosed with same sort of cancer in Feb. Mayo Drs recommended 7 weeks radiation. 35 doses. Mon-fri.
I also had chemo 1 time per week.
1st few weeks are a breeze. It’s been 7 weeks since last treatment. Your husband has to develop a warrior mentality. He can beat this! It’s no fun and it can take a long time to feel good again. People are winning.
For me? Faith in Jesus Christ has strengthened and is my anchor.

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That’s the first time and hopefully the last time I have ever heard of a doctor concluding without a biopsy that if a patient doesn’t drink or smoke then the cancer must be HPV related. That doctor tossed out any possible reason such as chemical, environmental, etc such as a factory worker I know who was exposed to fiberglass and died from non-HPV throat cancer who also didn’t drink or smoke.
I’m sorry you have to go through this. I do hope you get biopsy results as HPV related is often easier to cure. (Mine was not HPV related but here I am over twenty years later). You should be planning July picnics and taking walks in the park, not planning doctor visits. Courage.
Thank you for the update. Can you keep me updated on what your plan is?

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He is to the stage where he will start feeling the radiation. On eating I was dependent on High Calorie Boost. 530 calories per serving. I was told to get down 4 or 5 per day and drink as much juice and water as possible. While at Mayo I was fortunate to get down 3. It was a battle because of the pain. I lost 40 lbs and lost a lot of muscle mass. In hindsight I should have opted for a feeding tube.
I am now 8 weeks out. I do get 5 boosts down, I eat yogurt, cup a soup,cream of wheat cereal, and drink apple juice and Gatorade diluted with water. So mostly still liquid.
I take liquid Tylenol for pain 3-4 times a day. I can tell you it is getting better. 8 weeks out. In another check in. This too, will pass. Exercise and rest and learn to live in the moment. I will say a prayer for you all.

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@joy345, I have been asking the Microsoft Bot all kinds of questions since the program emerged. I wonder if it can get annoyed! Anyway, here is what I asked it after reading your dilemma: "If someone with tonsil cancer has doctor # one suggesting high-dose radiation and doctor # two suggesting a lower dose saying it is probably HPV related, which should person choose?" Here is the answer the AI gave: " Both high-dose radiation and lower dose radiation are used to treat tonsil cancer. However, researchers are studying whether people with HPV-related tonsil cancer can be treated with lower doses of radiation and chemotherapy. This less intense treatment causes fewer side effects and, in early studies, seems to be as effective as higher doses. It is best to consult with your doctor to determine which treatment is best for you."
Perhaps a third opinion may be something you and your husband could do if affordable/allowed by insurance.
Indecision seems to be a part of this journey. The best advice this mere human can give is to pray to our wonderful God for signs as to which direction to take. It sounds as though you already know that! I pray you and your husband have peace in your hearts and wisdom in your minds.

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