@wasserja
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Hello, my husband was recently diagnosed with head and neck cancer with an unknown primary as the PET scan didn’t show anything definitive. He has swollen lymph nodes on one side of his neck, but no other symptoms. After consultations with the oncologist and radiation oncologist they talked about a plan of radiation paired with chemo (Cisplatin) and sounded pretty confident about that plan being successful. Then after they did a PET scan, they changed direction and sent him back to the ENT who said they decided to do surgery to remove the enlarged lymph nodes, possibly the tonsils and while they are in there, take samples to biopsy from all the high risk areas - tonsils, back of throat, and base of tongue with the hope of finding the source so they can better target the radiation. He also used the term neck dissection which when googled sounds pretty serious/scary. The surgery is tomorrow and we are pretty scared since so much is unknown. I can’t help wondering if we should have gotten a second opinion, but since things have moved so quickly, I didn’t think delaying the surgery would be a good idea. Anyone else have knowledge of the procedure to remove the lymph nodes in the neck? What was the recovery like?
Hello,
Thank you for sharing your story. I know how overwhelming this is and please know that you are not alone.My husband Joe started this same journey in February. He has HNC SCC CUP He first had tonsillectomy. They did not find primary. Very painful, about 3 weeks recovery, insist on pain meds. Next he had neck dissection to get rid of mass which was in his submandibular gland, also removed lymph nodes and a tiny part of jaw. This surgery hurt him the least and he recovered fairly quickly. They still did not find primary. We then went to Mayo Clinic for a second opinion. Mayo did TORS still could not find primary. TORS very painful like tonsillectomy . He lost 25 pounds total from 3 surgeries.
They were recommending targeted radiation and standard chemotherapy.Seven weeks. We decided to come back to Georgia for this. The 3 surgeries were a pain but the goal was to find the primary which we did not but since they eliminated these areas the radiation could be targeted. It was 10 minutes a day and he says not too bad with very few side effects. The chemotherapy was once a week 6 hours. He brought his iPad and watched movies.Took nausea pills and slept a lot. I left him be and did stupid stuff like mindless mall shopping, coffee with gals or baked on the chemo days.
Now a month out from finishing these he is regaining taste, strength, all motor movement and only has to shave on one side of his face. He can spit again and his smile is less and less crooked. We will have a follow up in 3 months.
The Mayo second opinion cost us about $14, 0000 but worth every penny for our peace of mind. We came home knowing that we had excellent care here and trusting the process.
Try to stay in the 24 hours you are in, be supportive and take care of yourself. It can get tense and is overwhelming but thank goodness for modern medicine. Namaste 🙏 MAC
I am so sorry about your husbands cancer prognosis. My husband has cancer of unknown primary. He too had tonsillectomy and neck dissection. We had been in a fog of uncertainty for most of this year. We went to Rochester MN.Mayo Clinic for one month. Although they didn’t find the primary we have no regrets about going and seeking a second opinion. He had a TORS surgery there. We returned home for suggested treatment. He is now doing radiation and chemotherapy. I hope you find more support for yourself and your husband. My heart goes out to you as I know how hard it is not to know.
@maryannecrawford thank couch for your reply:support. My brother in law is having a very hard time but just 5 more days til mediation complete and healing begins. He has pneumonia RLL and is having a heck
Of a time. Please pray for him and all those with this struggle .
@maryannecrawford thank couch for your reply:support. My brother in law is having a very hard time but just 5 more days til mediation complete and healing begins. He has pneumonia RLL and is having a heck
Of a time. Please pray for him and all those with this struggle .
My Mom has Carcinoma of unknow primary. Her Ct scan & MRI shown no tumor or lesions, but the test came out from her fluid in her lung said she has some cancer cells. She had not symptom. The oncologist gives her chemo every week with Taxol & Carbo for 3 months and I don't know what is going on after that. She's 74 years old and I don't want she has chemo for long time. These Chemo drugs are strong for her. Is anyone out there had cancer like her and what do we can do. Thanks.
My Mom has Carcinoma of unknow primary. Her Ct scan & MRI shown no tumor or lesions, but the test came out from her fluid in her lung said she has some cancer cells. She had not symptom. The oncologist gives her chemo every week with Taxol & Carbo for 3 months and I don't know what is going on after that. She's 74 years old and I don't want she has chemo for long time. These Chemo drugs are strong for her. Is anyone out there had cancer like her and what do we can do. Thanks.
@khanhngd, I can understand not wanting to see your mom having to take strong chemo medications for a long time. I assume they will monitor the response to treatment after three months to determine next steps. When will your mom complete the 3 months of chemo? How are YOU doing?
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@wasserja
No problem. If you want to respond to a particular post, click on "Reply" under the post, and the comment will be automatically directed to the right post. Alternatively, you can use @username, to direct your comment to the right member, as I did when I began the post to you.
Hello,
Thank you for sharing your story. I know how overwhelming this is and please know that you are not alone.My husband Joe started this same journey in February. He has HNC SCC CUP He first had tonsillectomy. They did not find primary. Very painful, about 3 weeks recovery, insist on pain meds. Next he had neck dissection to get rid of mass which was in his submandibular gland, also removed lymph nodes and a tiny part of jaw. This surgery hurt him the least and he recovered fairly quickly. They still did not find primary. We then went to Mayo Clinic for a second opinion. Mayo did TORS still could not find primary. TORS very painful like tonsillectomy . He lost 25 pounds total from 3 surgeries.
They were recommending targeted radiation and standard chemotherapy.Seven weeks. We decided to come back to Georgia for this. The 3 surgeries were a pain but the goal was to find the primary which we did not but since they eliminated these areas the radiation could be targeted. It was 10 minutes a day and he says not too bad with very few side effects. The chemotherapy was once a week 6 hours. He brought his iPad and watched movies.Took nausea pills and slept a lot. I left him be and did stupid stuff like mindless mall shopping, coffee with gals or baked on the chemo days.
Now a month out from finishing these he is regaining taste, strength, all motor movement and only has to shave on one side of his face. He can spit again and his smile is less and less crooked. We will have a follow up in 3 months.
The Mayo second opinion cost us about $14, 0000 but worth every penny for our peace of mind. We came home knowing that we had excellent care here and trusting the process.
Try to stay in the 24 hours you are in, be supportive and take care of yourself. It can get tense and is overwhelming but thank goodness for modern medicine. Namaste 🙏 MAC
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4 Reactions@maryannecrawford thank couch for your reply:support. My brother in law is having a very hard time but just 5 more days til mediation complete and healing begins. He has pneumonia RLL and is having a heck
Of a time. Please pray for him and all those with this struggle .
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Hug
3 Reactions@carlajones101 I will him in my prayers.
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1 ReactionMy Mom has Carcinoma of unknow primary. Her Ct scan & MRI shown no tumor or lesions, but the test came out from her fluid in her lung said she has some cancer cells. She had not symptom. The oncologist gives her chemo every week with Taxol & Carbo for 3 months and I don't know what is going on after that. She's 74 years old and I don't want she has chemo for long time. These Chemo drugs are strong for her. Is anyone out there had cancer like her and what do we can do. Thanks.
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Helpful -
Hug
1 Reaction@khanhngd, I can understand not wanting to see your mom having to take strong chemo medications for a long time. I assume they will monitor the response to treatment after three months to determine next steps. When will your mom complete the 3 months of chemo? How are YOU doing?
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