Husband diagnosed with tonsil cancer: looking for tips and support

Posted by joy345 @joy345, Jun 24, 2023

I am writing for my husband who was recently diagnose with Tonsil Cancer. He finished the biopsy and PET scan but we do not know what stage is his cancer. The hospital we are in and ENT Dr. will not performed surgery and we were informed by phone of 6 weeks of radiation and 3 cycles of Chemo. We will know details with the oncology and radiology later this week. We will be seeing another Dr. for second opinion.

I feel bad we do not know the stage of his cancer and other details on the treatment. My husband is depressed for this was unexpected. He was told its only inflammation on his lymph nodes and the biopsy confirmed to be SCC(Squamous Cell Carcinoma). As the caregiver, I am hoping this forum/discussions will provide us encouragement and suggestions/help on the treatment he will be having.

I am new to this group.
Thank you for understanding.

Interested in more discussions like this? Go to the Head & Neck Cancer Support Group.

William Olsen, Volunteer Mentor | @hrhwilliam | Apr 3, 2024

In reply to @cris2 "Do you know how long it takes before the weight goes back on, he’s been eating..." + (show)

4 pounds in a month sounds good. He is getting what he needs plus a bit to store away.
For me if I can recall it took almost a year to gain back 35 I lost.
On the mend is music to the soul.

cris2 | @cris2 | Apr 4, 2024

In reply to @hrhwilliam "4 pounds in a month sounds good. He is getting what he needs plus a bit..." + (show)

Ok thanks. When someone doesn’t want to gain(like me) it goes on quick!

jclassey | @jclassey | Apr 4, 2024

In reply to @cris2 "Do you know how long it takes before the weight goes back on, he’s been eating..." + (show)

Jclassey again
It takes a while.
I went from 168 down to 140 and I have still only gone back up about 8 lbs since December. I do excercises most days too. So that’s more calories used. I eat all of the time.
Good to hear that he is able to eat now. Just be patient as long as he’s trending up that’s good!

laconiaborn54 | @laconiaborn54 | Apr 4, 2024

Hello joy345, I don't understand why they won't do surgery. I had cancer in left tonsil plus lump on left side of neck.
Both tonsils removed plus tissue scrape from back of throat along with removing 43 lymph nodes taken out. One node had cancer.
The surgery really went really and wasn't that bad when I woke up. After talking to my radiologist I opt out of radiation and she really didn't have a problem with it.
I still go to hospital once a month to be check on blood work pet scan coming up. If I were your I'd seek other doctors. Good luck.

johnschaar | @johnschaar | Jan 4 3:35pm

I was diagnosed in June 2024 with tonsil Cancer...I have, as of this time refused the traditional form of treatments because of my spouse and that I fear the Chemo and radiation. Depression seems to be my daily routine but staying busy seems to help. Finding a Solution that I am comfortable with seems to be difficult at this time. I will be reaching out to my Oncologist at The University of Michigan in the very near future. From everything I have read, results can be very promising. Please give your husband the support he needs, I am sure he is just as frightened as I am. I just need to control my fear and get started.

deb26 | @deb26 | Jan 12 8:51am

In reply to @sandralea58 "Thank you for your comments. Can you share what the common drug being used you referred..." + (show)

@sandralea58

Thank you for your comments. Can you share what the common drug being used you referred to? My 70 year old husband was only offered Cisplatin and when we questioned if there was another drug the Oncologist said no. It is most likely because Cisplatin is the only SOC at our Canadian Cancer Clinic. Looking back, I wish he had been more persistent in alternate drug therapy. When I questioned if the decision to decline the Cisplatin offered was sound, because we were told by the ENT surgeon that we only get one shot at treatment, he shut me down and said it was my husband who had the final decision. My opinion did not count and my concerns were not heard. It would be nice to know what the most current treatment is at the bigger centres. When the biopsy comes back with HPV positive, the outcomes are better. In our case, at 70, the 35 rounds of radiation was his only treatment, due to the risks associated with Cisplatin at his age. It is not that the drug is not good, but the side effects for an older individual is something to discuss with your Oncologist. Robotic surgery also was not offered. At times, we both felt like we needed to push harder for treatment. We are not through this yet, as his first PET scan 3 months post treatment still showed some activity. He is scheduled for a second PET scan which will be 6 months post treatment. We are Canadians who are faced with a crumbling health care system. You are so right. It is paramount for one to take the reins of this pursuit. My husband is a passive patient, and for me it has been a difficult journey. I would have pushed harder if it had been me, and it has created a strain on our relationship for reasons I won’t go into here. A cancer diagnosis is a huge test in all areas from the first steps taken. Keep a journal, do your research and please encourage the patient to get the best treatment available. The brilliant research and the treatments coming should be available for everyone.

Jump to this post

My husband is receiving treatment for mucosal melanoma in his right sinus cavity. He was referred to a doctor in St. Pete, Florida, who specializes in sinus issues including cancer. My husband had two surgeries and then he was referred to the UF Proton Institute in Jacksonville for 33 proton treatments and weekly infusions of Cisplatin. In my limited research, I have found the use of Cisplatin with radiation treatments to be the standard. The oncologist administering the Cisplatin explained that the drug makes the radiation more effective. I would ask your doctor if research bears this out. The dosage usually given with radiation is 1/3 to 1/4 of the regular dosage. My husband is 76. My belief is that is very important to receive treatment from an institute that knows what the latest research says about treatment. My husband's cancer is so rare that it is difficult to find any research dealing with it. So, we looked for doctors and institutions that had experience with head and neck cancers. Once my husband finishes at the Proton Institute, we will seek out an oncologist with expertise in mucosal melanoma if we can find one nearby. If not, we are discussing going to a cancer center where, hopefully, the oncologists there are aware of the latest treatments and research involving this type of cancer. I hope this helps. And yes, the whole thing is a considerable strain. At this point, it is also a full-time job.

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