Anyone had Metastatic Squamous Cell Carcinoma?

Thank you so much for responding. He has regional spread cutaneous squamous cell carcinoma. He will have surgery on Dec 27th to remove the lymph nodes followed by 6 weeks of radiation 5 days a week. Do you have any experience with the surgery of neck dissection and radiation side effects?
Thank you so much
Rebecca

Rebecca, you'll get some helpful tips from members like @sepdvm @ltecato @ascc17 @larson1540. @kecm was asking very similar questions and has since had surgery and can also help.

- Anyone had neck dissection surgery? What are your tips? https://connect.mayoclinic.org/discussion/neck-malignant-lymph-node-cancer-recurrence/

Many of these members also have experience with radiation too.

I had the surgery after the radiation. It might be better to have the surgery first because radiation reduces the oxygen supply to the tissue.

My surgery caused a permanent loss of sensation in that region of my neck and a lot of persistent and “loud” tingling from the damaged nerves. My sternocleidomastoid muscle was removed on one side. Muscle spasms were bad for a couple of years and still flare up. You have to have physical therapy to get your neck and shoulders straightened out. Therapists will be criticizing your posture a lot. The shoulder on the surgery side will look like it belongs to a bodybuilder because it has to work harder.

As far as radiation, you might lose saliva permanently. No one appreciates saliva until it’s gone. Then you can say “Goodbye teeth” unless you do exactly what the radiologist and dentist tell you to do about oral hygiene and fluoride treatments. I didn’t because I was a young fool. I regret that every day now.

Radiation causes two other side effects: trismus and dysphagia, but in my case they didn’t effect me much until about 30 years after the cobalt treatments. Trismus is another word for lockjaw. It makes dental problems a lot harder to address, so like I said, you should heed the warnings about getting a Water Pic and using it.

Dysphagia is trouble swallowing. I am now on a “soft mechanical/full-liquid” diet. I have not been able to eat “regular” food for at least 5 years. But I was fairly normal for 20 years after radiation. The tissue damage apparently gets worse with age.

If the dysphagia is bad enough, the patient can get a feeding tube but the tubes are controversial. They are supposed to prevent aspiration pneumonia but the evidence of efficacy is less than convincing. I had one for a while and hated it. For one thing, the tube falls out or wears out every six months or so. I am biased against feeding tubes, obviously, but some people do not have a choice, I guess.

My initial surgery involved a select neck dissection, but while part of the parotid salivary gland was removed for involvement in tumor, the regional lymph nodes were all clear at that time. With positive lymph nodes the surgery might be more extensive than mine was. Radiation followed a month later with a targeted therapy infusion weekly to sensitize the tumor to radiation. I had no real issues with that part of the surgery other than a partially dry mouth which has worsened with time ( 10 years have passed). Radiation caused skin rash and mouth ulceration and big changes to my taste sense. I did not have a feeding tube because I was always able to swallow soft foods and liquids. Have any dental issues addressed prior to radiation with a knowledgable dentist. Mine was not. There was a mixture of Maalox and benadryl and an antifungal called Magic Mouthwash from the oncologist at Univ. of MI which was dispensed and helped with mouth pain. There is also a topical oral lidocaine gel to use for mouth pain. You can lose a lot of weight during the 7 weeks of radiation, but healing starts right away once it is stopped. It takes a months for taste to return to a new normal. There are many remedies available for dry mouth and I continue to find more solutions. Staying hydrated is so important during and after so drinking electrolyte solutions and water helps. I did need IV fluids toward the end of radiation as it was hot summer and I was also nauseated from the chemotherapy. Best of luck to you. I'm glad you can enjoy the holiday before all of this treatment begins.

I have had throat cancer since 2019. I went thru 35X proton beam radiation with chemo. It was gone for 1 PETSCAN and came back. i then had the neck dissection surgery. They thought they had removed all the cancer however the PETSCAN showed the tumor had attached to my carotid artery. They would not risk surgery again to extract it so it's staying with me. They put me on the Keytruda immunotherapy, It worked well worked for about a year with no side effects. I then then went back to chemo with another immunotherapy that nearly wiped me out. I ended up getting a tracheostomy which i had initially refused. They put me on Opdivo as a last resort about a year ago and the cancer has been stable. I've been lucky and could not say what I would have done and not done because it's hard to know the exact results of any therapy. Opdivo Treatments are 1X/month with no side effects. The neck dissection surgery was hard. I had nerve damage to my neck and have edema in my throat, but I'm still going!

In April & May of 2022 I thought I had a swollen Lymph node so I went to my doctor and started a journey of discovery to figure out what it was - The object in my neck was a palpable lateral right neck mass measuring approximately 3 cm. After fine needle aspiration by pathologist: The mass was Positive for metastatic squamous cell carcinoma. I feel incredibly lucky that this was caught early. Starting in June I had 33 radiation treatments along with Chemo. My last treatment was August 12th & I’ve been in recovery since trying to regain weight & muscle while dealing with saliva side effects and rebuilding my immune system. The accumulative Treatment is tough and the mental and physical impacts to weight loss / lack of ability to swallow for weeks was much harder than anticipated.

It gets better. You're strong. Keep up the good work!

You have had a tough battle and it isn't over yet, but from here each day may bring a little more relief. When you have a better day, hang onto that feeling and know that you will have many more as the weeks go by. Keep trying new things to help gain weight, as your taste buds will keep changing. I mostly lived on smoothies made with whatever fresh fruit tasted right, but added ricotta or cottage cheese for protein. The tang of yogurt just wasn't pleasant. It sounds like you didn't have a feeding tube but that is always a temporary option. I survived without one also but getting enough calories in is tough. Stay active and look into a mild exercise program like beginning yoga. I kept walking daily even when I needed a cane for balance. A year from now you will be doing so much better, adapting to the new normal. For a bittersweet smile, google "cancer and mountain lion" to see a very creative little analogy for cancer treatment that someone wrote.... I smile and shed a tear at when I read it. Be strong and good luck.

@chanderson, I’d like to add my welcome along with @jimthomasintl and @sepdvm.

What helps you with regaining weight & nuscle? Any tips to share? Did you work with a speech therapist to rehab the ability to swallow again?

Yes my guy had and now 1. 25 years larer its a disant metatastic to my bones. He just had invasve spinal surery and has rods i his back as his cancer was in his spine