Reccurence: Buccal Mucosa SCC

dubb_K

Hello everyone:

I am feeling a lot of emotions right now as I have a recurrence of my cancer - just 8 months after surgery. I know this is a cancer known for recurrence, but my surgeon was confident I would do okay - my margins were clear, I don't smoke, etc. But as we all know, cancer has a mind of its own.

My primary medical person is away, so I was informed by my GP. My surgeon is back tomorrow, so we'll talk at the end of the day tomorrow. I'm anxious to know what treatment course I'll have. I'm also miffed that I won't even get to eat normally before having surgery again. (Radiation just massacred my mouth and I still have sores, and significant trismus which means I still struggle eating solid food.)

I thought this summer would be filled with some domestic trips to see friends, lot of pickleball, and time at the lake. Ugh.

If anyone has any information about recurrence experience, I'd love to hear about it.

Thanks
Karen
Diagnosis: July 2023 - Stage IVA Buccal Mucosa SCC
Surgery: September 19, 2023
Radiation: 6 weeks - Finished Jan 15, 2024
Recurrence: May 15, 2024

wbcgaruss

Hello, Karen, and welcome to the CSN H&N discussion forum.

It is hard to imagine what you are going through mentally and physically right now, it has to be devastating and heartbreaking to get the news of a recurrence only 3 months out from treatment.

My heart goes out to you and I will pray for you.

So what I am understanding is you had surgery and 6 weeks of radiation so you were through the mill of H&N treatment like the rest of us here.

As I always say and you have found first hand this treatment is Brutal.

I am sorry this is happening to you but even though this cancer in known for recurrence you certainly didn’t expect it now and I am sure you were hoping for never.

Statistically wise there are certain percentages of cases of almost any kind of cancer that end up having recurrence but not usually in the short term and unfortunately you are one of the statistics you don’t want to be.

I know where you are at I had cancer 3 times but I do not think they were recurrence I think they were all new cancers although my last one may have been a metastasis from the previous operation for tongue cancer.

My second cancer was almost 5 years out and it is certainly a shock when you receive that diagnosis again “It’s Cancer”.

What I will say is you just have to move forward and unfortunately deal with this beast again, certainly not what you had in mind to fill your summer days.

This is not easy but you now have under your belt your past treatment experience and it does something in your mind once you go through this treatment once, it makes you stronger mentally as well as physically.

You know what got you through some of the most difficult periods of your life and beat cancer so you have that to fall back on to help and strengthen you, yes you are a victorious warrior, at least that is what we consider each other on here.

I do not know what they will do now to fight this, whether you will have surgery again or what.

One thing I would ask is did you have a PET scan and do they plan to give you a PET scan before continuing with your case? The reason I mention this is I have been reading a bit about it and it can also go to your lymph nodes. The reason I am thinking this way is because going after this the second time you want to make sure of all possible angles and make this approach hopefully a once-and-done procedure covering all possibilities to rid you of this cancer. My radiation oncologist said this is a one-shot deal, but In your case a 2 shot deal now.

I also noticed in reading the type of cancer you are dealing with is considered rare and not as common in the United States.

Hopefully, your recurrence is very small and requires only minor surgical intervention.

I don’t know if you need any information on this but it is well covered on the internet and I am going to post a couple of links if you need more info.

Buccal Mucosa Cancer-Cleveland Clinic

https://my.clevelandclinic.org/health/diseases/23423-buccal-mucosa-inner-cheek-cancer

Increased prevalence of recurrence in squamous cell carcinoma arising from buccal mucosa: A pervasive threat requiring multidimensional perspectives

https://www.sciencedirect.com/science/article/pii/S2772906024003169

I have also found some videos on utube adressing this situation and many are from foreign countries to the US because this type of cancer is not common in the US as much. Many of the videos addressing this are dealing with what they call laser surgery for elimination or control and it seems to work well for many of them. You may want to ask your doctor if laser surgery is available and his evaluation of its usefulness. I will post a couple here…

Recurrence After Buccal Carcinoma Surgery

https://www.youtube.com/watch?v=3dXITWYwX2s

Squamous Papillary Lesion of the Oral Mucosa: Management with Diode Laser and Operative Microscope

https://www.youtube.com/watch?v=IeQKdIYKGWQ

I Am Wishing You The Best

Please keep us updated and anything we can do to help.

Our motto on here is NEGU (Never Ever Give Up)

I would also recommend you check out the Superthread at the top of the page there is loads of information in there with links and you will find it helpful.

Take Care, God Bless

Russ

dubb_K

https://csn.cancer.org/discussion/comment/1715821#Comment_1715821

I really appreciate the links you provided. I have had a PET scan and CT Scan. It noted the continued activity in the buccal mucosa site of the cancer, but sad "resolution of prior right cervical lymphadenopathy" which I take as positive. I'll know more after talking to my surgeon this afternoon. Last time there were a couple of lymph node that were easy to see because they protruded. This time my neck is still so swollen from radiation that it's hard to tell. We'll see…

wbcgaruss

Very well, Karen, I am wishing you the best and praying for you and for a positive outcome in your situation. Do not let this get you down. You beat the last occurrence you can beat this one too. Move forward and be victorious again. You have to win each battle as it comes. So you won the last battle you will win this one and then hopefully there will be no more cancer battles for you from here on out.

If there is anything else I can assist you with as far as support or help let me know. During these times every little bit helps.

Take Care, God Bless

Russ

rboots

Wishing you the best, Karen. One day at a time.