Meet others living with Head & Neck Cancer: Introduce yourself

You can send me a message anytime you need to talk or vent.
Cancer for sure can alienate us but we have to remain social for sure!

MOJO

Thank you so much. I truly appreciate it.

Hello @jgraz17.
That is what Connect is all about, supporting others and offering a safe place to share your thoughts with others who have similar experiences. Your age of onset is rather shocking, and it makes me wonder if you have any family history of SCC? Since my dad passed away from oral SCC, and my mom had skin SCC removed twice from her leg, I have assumed that my head and Neck SCC starting in my ear had a genetic component. My dad was a recovered alcoholic and smoked for 50 years so we know his predisposition, and my mom was a sun worshipper living in Fla so another good reason.
It is true that others have no idea about the suffering you go through with each surgery, procedure, treatment, and scan. Not to mention the day to day things you live with like dry mouth, swallowing, eating and speech issues, and changes in appearance with nerve damage, etc, etc. You are fortunate to have had a good support system all these years as that is all important. I have metastatic SCC for 13 years now, but it all started at the age of 58. Because of my family history I avoided alcohol and smoking and even sun exposure after my teenage years but my career as a veterinarian did expose me to x-rays. Whatever the causes, which we will likely never know, it is what we live with, as you said. I can tell myself that this is better than being dead, and perhaps there is a purpose for cancer patients to pave the way for new treatments so fewer people will have to suffer through this.
Once you pass through the Why me and I just want to go back to the way I was stages, forward is the only direction to face. At the suggestion of my surgeons early on, I made short term goals and have now passed so many of these! Looking ahead and making goals has given me a more positive attitude and helped me to appreciate each day in my life, each moment appreciating nature, each family member or friend that I can help......so many things. I wish so much that I was not on this cancer journey, but it has brought a different outlook to my life and the way I live each day. Please share your thoughts and feelings here on Connect. It might help your loneliness to meet others who know your struggle.

Hello all, I’m just joining this group almost 1 year after surgery for squamous cell cancer of the right cheek that metastasized to the facial nerve, parotid gland, anterior cervical lymph nodes. A skin graft was used to cover the defect from involved cheek skin
I received proton beam radiation and cisplatin chemotherapy for this last summer then last fall a metastatic tumor was found in my right upper lung and now I’m receiving cemiplimab iv treatment every 3 weeks which causes some side effects but otherwise is responding very well. I appreciate all the support that you provide to each other and decided to join in.
Gene

Sue,

Many thanks for your reply. I truly appreciate it.

Suffering in silence is not easy and I have yet to meet anyone who has lived through this. Although cancer is awful and can be isolating it feels good to know we are not alone.

I have no familial history of SCC. I was a sun worshipper throughout my twenties and have often wondered if that is an underlying factor.

I continue to hope for better days.

Jules

Hi Gene, welcome to our H&N group. Curious how long you expect to be on cemiplimab and what side effects that causes. This therapy is rather new as I'm sure you are aware. It seems to be a game-changer from our traditional cures and many patients are curious about it. I am discovering some clinics which refuse to even consider this route, knowing that the traditional easy bake oven procedure always worked in the past so why trust anything else. Looking forward to your input. Will

Hi jgraz
I am 72 yo and had nasopharyngeal cancer treatment - IV stage, with radiation and cisplatin treatments. I went through all the feeding tube, weight loss, mucus in mouth, hearing loss, loss in taste. After a couple of years, I was almost back to norm - with only issues of dry mouth and have a carry a bottle of water with me at all times, and a hearing loss - with hearing on my left ear completely at '0'
But in mid-2020, I suddenly had problems with my speech and swallowing was more difficult - with food getting stuck in my throat and having to give it a hard cough to get the food out. Diagnosed with late effects of radiation - dysphagia, dysarthria and severe neck fibrosis. Was told by my medical team at Princess Margaret Cancer Centre that my situation would never improve and that i might have to get a feeding tube to survive (to this, I am definitely against a feeding tube - and would opt for MAid).
Because of my issues with speech, hearing loss and swallowing (especially in public where I am not comfortable in having to cough up food stuck in the middle of throat). And find it frustrating having to explain why I am slurring and having people tell me that they can't get what I am saying. With hearing - missing out of conversation (even with hearing aids) and not able to follow the flow of conversation.
With all these issues I am having and facing - I tend to isolate myself (I live on my own). This is because I feel that if I can be 'ok' on my own and not have to explain over and over again as to why I am not able to talk, eat and listen - I might be more at peace on my own.
Not sure if this is a good move on my part and am doing my best to take a day at a time - and take whatever comes next!!
Hear you - it's a sad and lonely journey!!

Hello all, I have been diagnosed with adenoid cystic carcinoma of the minor salivary gland. It was diagnosed by biopsy back in February and I am waiting for treatment now. It’s in my sinus region and they don’t think they will be able to get clear margins as is too close to the skull base. Has anyone else been in this situation of not being able to get clear margins in surgery and if so did you end up having the surgery or just radiotherapy? We have had 50:50 responses on whether it’s worth removing as much as possible/debulk before radiotherapy or just do radiotherapy alone (although previously told alone wouldn’t do much). Just wondering what experiences people had and whether thoughts vary around the world? Thank you, nice to be a part of this group

Hello @alexandra24 and welcome to Head and Neck Connect. Also sorry that you need to be here, but we can offer support to help you get through this. I know your cancer is a rare one and hopefully others will chime in with their experiences.

My SCC of skin origin began in my ear canal near the eardrum and invaded into the temporal bone of my skull. I had surgery at Mayo Clinic with partial parotidectomy and neck dissection and margins were not clear. The followup was then radiation with a targeted drug to sensitize the tumor cells to the radiation. That was started 5 weeks after surgery, delayed due to logistics. SCC is not particularly sensitive to radiation unless it is HPV associated, which mine was not. I have not had a recurrence at that site in 13 years. I have had 4 metastases which have been dealt with surgically, and the last one by Immunotherapy.

My advice is to ask for referral, even by videovisit, to a major referral cancer center where they have the most experience in rare cancers. It sounds like you may have done this already. If radiation alone does not offer a good prognosis then I would be seeking out a surgeon with much experience. My surgery and recovery were not fun and games, but it was certainly better than having a cancer growing into my skull. Radiation and chemo were the tougher part of the whole treatment.

Is your medical team already a part of a large referral center? Have you asked about complications of surgery ? Have they discussed following surgery with radiation if margins are not clear? Having a rare cancer means there is less information available to help you and your medical team make decisions. Be strong and you will get through this.

I was diagnosed with SC tongue CA 2 .5 years ago followed by partial glossectomy and flap graft, then radiation for 6 weeks. More than 40 nodes were removed from my right neck with only one being positive. I had no significant risk factors other than a sibling with tongue CA. The most traumatic part of treatment was post radiation side effects including significant oral pain. Magic mouthwash and Hydrocodone did not give adequate relief, so finally I was placed on long acting morphine that did relieve the severe mouth burning. I was weened off of morphine after 6 weeks with no issue. Subsequently, I learned how to eat solids again but had some limitations with chewing on one side as a molar became loose, then eventually fell out. I continue to have severe dry mouth especially at night with mouth breathing, some difficulty with large pills, too big of food pieces and occasionally choke just on liquids. I find that xylogel works the best for the dry mouth. My speech is slightly affected but can be understood for the most part. I have experienced new tongue pain far posterior to the the site of the original ulcer that was on the lateral mid side of my tongue. It is especially uncomfortable with solids sliding past that portion of my tongue and aggravated with talking. CT and MRI recently are negative, as well, as having no findings on the oral exam by my surgeon. I am awaiting the next steps to follow up. In addition, I am dealing with one more loose molar that has been shaved off to the gum line to enhance cleaning that tooth that had been surrounded by an inflamed gum. Eating has changed again to pureed foods or very soft foods to reduce pain with swallowing. I have been told that on occasion there may be unexplained oral pain following radiation. One caveat I learned after the radiation treatment that is, don't hesitate to seek adequate pain treatment if the initial medications are not doing the job. The other caveat is that the water pick became my new best friend using it after every intake along with brushing with a rodadent TB. Taste has change a lot, especially sweet flavors. I may get a burst of flavor with the first one or 2 bites then it is very blunted. I can distinguish non sweet foods but some may be more over powering than before. I tolerate very few spices, especially hot spices. ETOH and peppermint are absolutely not tolerated. Even things like cinnamon or garlic applied too heavily will burn my mouth. It's been trial and error for many foods making eating out a considerable challenge. By joining this group, I hope to give some insight perhaps and learn from other's experiences. It has been a difficult journey for me, so when I say I understand at least some of your difficulties, it is coming from a pace of personal experience and empathy.