Husband diagnosed with tonsil cancer: looking for tips and support

Hello joy345. You are in the right group. Squamous cell carcinoma is a rather rare diagnosis for most doctors and treatment by most oncologist generally speaking. Even though we often hear of cancers, SCC is not usually mentioned. That being said, it is probably the first time your doctor(s) are dealing with this and that would be a good question to ask them.
We often seek out cancer doctors/surgeons well versed in the treatment of SSC, which means either a cancer treatment hospital, or a big city or university hospital or clinics such as Cleveland or Mayo in the USA. Birmingham hospital in the UK is another one. Not sure where you live.
Your husband is depressed and that of course is to be expected. This is not something anticipated in life and not a battle of his choosing he has to fight. Perhaps you could encourage him to read some of posts in this group as I am sure you are aware of the many discussions of tonsil cancer here.
Surgery is common and normal for SSC on the tonsil except in the case of small tumors where a biopsy has been performed and it has been determined that the cancer is HPV related. In those cases lately the cancer has been treated with a now common drug and radiation only. So there are options.
So please now, find out your doctor’s experience with this cancer and if as I suspect it is lacking, find out where your husband can go for treatment. Radiation therapy can be done mostly locally but the surgery (if needed) must be done somewhere with experience. It is paramount for you and your husband to take the reins in this pursuit.
Can you please keep me informed so I or others here can help you both get through this? Life is what happens when you’re making other plans.

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.

Sorry to hear this. It is an unexpected battle. It sounds like you and your husband are a good team. He will need an encouraging, caring partner through this process. Advocate for yourselves, get multiple opinions and work with insurance along the way. We have learned hospitals and doctors will offer what they have available and can do themselves, but seem reluctant to send patients elsewhere; where they might find other options and better care. Advocate for yourselves and brace for a long process; physically and emotionally. The best news we got in the beginning, was that this type of cancer is very treatable and even curable in most cases if caught early.

Your case sounds like my case exactly. I was diagnosed in November ‘22 with squamous cell / HPV. We and ended up at Mayo (in AZ) for a second opinion, where I have gotten terrific care. I heard the side effects of radiation in the throat could be pretty rough, so I opted for the robotic surgery in May ‘23. Doc removed the cancer from the tongue tonsil and the swollen lymph node in my neck, along with many other clean nodes. I’m still recovering from the surgery (1 month out now), but I’m getting there. Doc said they got clean edges on the cancer and clean nodes in the neck, but they want to use radiation on my neck to lower the risk of reoccurrence. Our insurance does not want to pay for the proton beam radiation, which comes with lower risk and fewer side effects. We are appealing. Regular radiation has higher risk and more side effects, so if insurance doesn’t come through, we’re not sure what we might do. Lots of prayers for direction.

It’s hard to stay positive during the process, but I think optimism and a positive attitude go a long way. I’ve had some depressing days and have felt overwhelmed by the process. I’m blessed with a great wife, as it sounds your husband is, too. 🙂 My wife, family, friends and lots of prayers have carried me through. Praying for a good outcome for your husband and you. Hang in there. 🙏❤️

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.

Sorry to hear of your challenges. We have Canadian friends and have heard good & bad stories about your health care. It’s not much consolation, but all the most current research and treatments are not always available in the USA either. Providers seem unwilling to direct patients to other centers and only seem to focus on what they know or have to offer. Insurance companies also have a huge hand in what patients can get. Insurance can deny treatments for various reasons that have nothing to do with care or the patient. Unfortunately in the USA, health care is a money making business and the patient’s needs are often secondary. We got a second opinion and are happy we did. You sound like a great caregiver and your husband is blessed to have you in his corner. Hang in there.

Kisquali is one of several. I don’t like to address specific meds as that should be up to a physician, which I am not.

I have the same diagnosis. Since March I’ve had a CTScan that showed a possible metastatic pathology in the lymph node then referred to an ENT , 4 needle biopsies in the node that showed cancer cells, surgery in the throat to take 6 biopsies and perform a tonsillectomy. The right tonsil was positive for squamous cell HPV16 cancer. I have just seen a robotic surgeon at a NC research and teaching hospital and will have surgery to remove the residual primary cancer and a lymph node dissection. Two nights in the hospital or no discharge until I can swallow. Surgeon was relieved that the cancer was of HPV origin because they know how it acts in the body. I may not have to have radiation or chemo but am not entirely sure until after the surgery. Next up this coming week is an updated contrast CTScan. I am lucky to live near great medical care and wonderful doctors. I have been very impressed with all three. Hope to not have to meet #4 (oncology)!

I am in tears as I read all the encouragements/experiences, suggestions/advises. I thank God for leading me here. I will share my husband’s journey as we will decide on his treatment plan, doctors, and which hospital. Thanks so much for all your kindness.

Hang in there! Did the biopsy reveal HPV+ ? If not, ask them to do the staining. It is very important to know. We had to go back to the radiologist to do this, as it wasn’t done automatically, which is just not acceptable. The only way they can test, is through biopsy. I had no idea that SCC in the throat could be caused from a virus from 25, 30 years ago or more. This generation (over 40) has seen 98% of us having had HPV at some time in our life. Most shed the virus, but some lay dormant. Cervical Cancer can we wiped out by early vaccination. Throat cancer as well. It would be interesting to know the stats, as it is very prevalent right now at our age to see SCC of tonsil. Cervical has had screening for a long time, with PAP tests. Throats are more difficult to biopsy. You usually don’t know you have cancer, until the lymph node swells up, as in my husband’s case. The good news is, that HPV+ rarely moves below the throat and has a very good success rate for survival. All the strength and wishes for you and your husband.

Just found this site and after reading many of the posts I am realizing that the encouraging words from my ENT are not preparing me for what may lie ahead. I am a 50-year-old reasonably healthy male with no medical history. I started spitting up blood in March. ER couldn't find anything and it stopped after a couple of hours. I felt fine so I ignored it until I started getting a really sore throat 2 months later which culminated in spitting up more blood. Saw an ENT who used a scope to look at my throat. The blood was coming from my left tonsil and the ENT said it was cancer; a week later, I had it removed. The biopsy confirmed p16+ Squamous Cell Carcinoma. 18 days later, I am nearly fully recovered from the tonsillectomy and trying to prepare for the next steps. This week I have to get an all-clear from my dentist and get my PET scan done to start radiation in 2 weeks. The Oncologist said Chemo might not be necessary if the PET scan returns as she hopes. I am wondering if there is anyone who has not experienced horrible side effects from radiation therapy or who might have tried alternative treatments.