Dear all,

I am very new to this forum and this whole world of cancer. It's a horrible world and I am feeling so overwhelmed, stressed, depressed and every other negative feelings one might have.

I am here to discuss and ask about my mother's SCC on lateral part of right side.
So my mom told me on 8th August, 2024 of a sore on her right lateral side of tongue, when I saw it i didnt like it. It looked like bulky blister. I sent its picture to a maxillofacial surgeon friend who told me we should have a biopsy done if the "blister" was more than 1 month old.. Mom said it started 2 to 3 months ago as a redness and kinda canker sore, and even had briefly healed. Friend recommended biopsy just to be sure.
On 9th august, took her to hospital and her biopsy was taken and submitted.
Due to friend, we got biopsy report on 12th august, which said it was a well differentiated squamous cell carcinoma. The report said following

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Sections examined reveal stratified squamous epithelium overlying fibromuscular tissue which is infiltrated by islands and nests of a malignant tumor. Individual cells comprising the tumor have squamoid appearance having high N/C ratio, pleomorphism and enlarged, hyperchromatic to vesicular nuclei with prominent nucleoli. Keratin pearl formation is also noted.
Opinion:
TONGUE (BIOPSY):
- Histological type: Squamous cell carcinoma
- Histological grade: Well differentiated
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It was like a bombshell. I didnt know how to tell my mother. Somehow I did, not disclosing the full extent of risks, at the time.

The same day we went for an MRI and got its report on the next day on 13th august. The report said following

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Findings:
There is a lesion in right posterolateral dorsal aspect of tongue with a depth of 8.2 mm from its lateral surface and 12.9 mm from its superior surface. It measures 14.3x8.4x14.5 mm. It is hyperintense on T2WI, isointense on T1WI and shows homogeneous enhancement. It is predominantly involving the intrinsic muscles. The upper fibers of right hyoglossus are involved. The genioglossus is spared. No involvement of middle septum. No involvement of mylohyoid or base of tongue seen. No involvement of bone. No involvement of retromolar trigone. No gingival mucosal involvement seen. No involvement of parapharyngeal space seen.
There are multiple subcm yet rounded lymph nodes at right level 1A, 1B, bilateral levels 2 and 3 , largest right 2A node is 6.5 mm. No nodal necrosis seen.
Right sided palatine tonsils have T2 hyperintensity and are mildly enlarged.
No lesion seen in bilateral parotids, submandibular glands and thyroid.
Included sections of orbits, brain and spine seen unremarkable.
Impression:
Known SCC tongue.
* Enhancing 1.4cm lesion in right posterolateral tongue with involved upper fibers of hyoglossus. It is not reaching the midline. No involvement of floor of mouth seen.
* Multiple subcm cervical lymph nodes in bilateral levels 2, 3 and right level 1. These require ultrasound correlation for characterization and core biopsy of suspicious nodes suggested.
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The same day we did her ultrasound as well for correlation for characterization and it said following

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Findings:
High resolution B scan of thyroid gland:
Right lobe of thyroid gland shows normal size with normal parenchymal echopattern and no evidence of any solid or cyst focal lesion.
Thyroid isthmus appears normal.
Left lobe of the thyroid gland is not visualised ---- correlate with previous surgical history.
Prominent cervical lymph nodes are seen, largest one measures upto 5mm in SAD with preserved fatty hilum on the right side at level 2.
Impression:
* Thyroid gland left lobectomy status.
* Prominent cervical lymph nodes with preserved fatty hilum.
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FYI: My mother had her left thyroid gland removed in October 2023.

So after ultrasound was done, my friend referred us to a famous and best Oral cancer specialist. He is best in our area and about 90% of his surgeries are cancer related.
He was kind enough to adjust us for a surgery on 19th August. He performed partial glossectomy and did neck dissection on right side. He told me he was quite aggressive and did thorough cleaning of neck.. He said although lymphs down below (whatever that means) looked fine but he went as far as level 5 and removed lymphs till that.
He told me he didnt want to leave things to chance. And is of the opinion that we should do radiotherapy so any residue of cancer cells are killed promptly, even though the biopsy report for lymph nodes etc is still pending and is expected on 28th to 30th August. Told me chemo won't be needed in his opinion but still only after biopsy report could we be in definite position

It's been third day since surgery and at random times I feel being claustrophobic and am driving myself crazy with negative thoughts of what's next and what if this happened and that happened. The pending biopsy report is getting on my nerves. Questions like what if lymph nodes were involved which the mri/ultrasound showed were prominent? I feel literally alone as I am supposed to be the strength of everyone around, the one who fixes everything.

So my question is, based on reports of my mother and the surgery that followed, has any one else been at the same level as my mother?
I will consult a good oncologist after the biopsy report, what questions should I be asking him?
Is there any advice or dos/donts that would be relevant in my mother's case?


What should I do in the meantime while the biopsy report is pending?

Any help would be greatly appreciated. And i am sorry if I have done anything wrong, posted this in wrong location or used wrong terminologies about cancer since i am very new to this world.

Hello Kashif,

Sorry to hear about your mother's recent diagnosis.

Welcome to the forums, and there should be lots of folks who have been in similar shoes, and hopefully quite a few nuggets of helpful wisdom you may find from other peoples journeys.

I hope she is recovering well and her pain and discomfort is managed well.

I hope you find some peace and rest amidst all the stress.

Glad you were there to take a picture and had a maxillofacial surgeon friend to consult with with a pretty rapid work up and initial surgery. 8th of August to 19th of August with all those testing and then the partial glossectomy, that's a pretty rapid response, and it seems you did quite well in accomplishing all that in such a quick time frame.

I am early in my journey, and had a very minimal partial glossectomy on a tiny tumor, did not need a neck dissection or lymph nodes biopsied as of yet, so I can't help you much with what to expect with the more intensive surgeries and radiation.

But there are others here who have been down a very similar path to both your mother, and yourself as a care giver and loved one.

I had a precancerous lesion that was being followed for several years.

Over those several years I had familiarized myself with this forum and read up on things, even before my lesion spawned a cancer.

The one nugget of wisdom I gathered early on, and made a promise to myself that if any future biopsy ever came back as cancer I'd be seeking treatment at a Comprehensive Cancer Center (CCC), and one with a good oral cancer team.

Sounds like you have an excellent surgeon, but if you are looking for a good oncologist or cancer radiologist to consult with, that hints to me you may not be currently at a CCC.

My surgery was done at a CCC, but the tumor so tiny, the Tumor Board approach was not invoked in my case, as we are hopeful for a 100% surgical cure (although I have a new leukoplakia that popped up close to the tumor scar that is not giving me a warm and fuzzy feeling right now, about 6 months after surgery). My surgeon is seeing me every 2 months and he may biopsy the new lesion next visit.

However should I have a recurrence, I am pretty sure that would invoke the Tumor Board approach (or I'd insist on it) where they gather a whole team of Oncological Surgeon(s), Radiologist, and Oncologists to review your mothers (and my, or whoever's) situation.

So it is a more integrated approach with a team of doctors who likely have a good deal of experience working closely with each other (or at least other similar specialist) as a team on similar cases as ours.

That's the only advice that I might suggest, if a CCC is available reasonably close to you, to see about a consultation with them or flat out just seeking their treatment as a patient.

There should be lots of people in these forums that have been down a road very similar.

You may be able to find someone in a very similar situation in their old post(s), if you dont see an answer to your message quickly by someone in shoes more closely fitted to your mother than I am.

Browsing through the different sections or searching for things may help as you read the other encouragement and advice people who have "been there, done that, and got the T-shirt" have given other folks with new diagnosis or just recovering from surgery at different stages or just getting fitted for radiation, or transferring to different medical systems etc...

You absolutely did not post any thing wrong (I was a bit apprehensive of that too when I first started posting stuff).

It sounds like the surgeon went aggressive with rooting out any likely possible lymph nodes. Even if they come back cancerous, that is one of the first places they go, and the nearest ones to the region they call "sentinel" (as in guard or alarm) lymph nodes capture the tumor. The enlarged ones are suspect, but I had several "reactive lymph nodes" that were inflamed due to cold/flu and a tetanus shot, and stitches on my finger. All that to say you can have enlarged lymph nodes that may just be part of an immune system response to infection or inflammation and may not be cancerous at all. Even if they did trap the migrating cancer cells and a spread started, the hope is with the relatively quick diagnosis and treatment you described, the bad ones were excised and with Radiation and whatever other treatments your medical team advises you will be well situated in your fight to eradicate any lingering cancer.

Hopefully I did not violate any protocols myself.

I've been more active myself lately as I am post surgery and a tad antsy about the new spot, and see some folks with recent diagnosis I'd like to offer some solace.

Keep your chin up, try to get some rest and take it day by day, week by week, rolling with the punches the best you folks can.

I hope you find some peace and can relax a little despite the challenges and unknowns.

Sincerely,

Chris

Hi Kashif

I am so sorry to hear of your mother's cancer diagnosis and your fear and pain as well. I went through a similar surgery and treatment about four years ago. I was stage 4 SCC. They removed half my tongue, rebuilt it with flesh from my forearm, removed all my neck nodes on that side, trach tube, etc. I had SCC in one node so also received radiation.

Rather than write a book, I would be happy to speak with you and/or your mother on the phone. I was lucky to have someone referred to me that had gone through this a few years before i did. It was very helpful to talk with him over the months of my recovery. It gave me and my family hope.

If you are interested, let me know, I will send a private message with my direct contact information.

Stay safe and keep the faith,
Nels

Thank you soo much Chris for your detailed reply. Your kind words touched my heart. I hope and pray for your speedy recovery as well.
My mother is recovering well from her surgery. From 19th August to 26th August, there is a marked improvement in her condition. I have been acting pretty strong and confident, however in my heart it's been one of the toughest time of my life. I am praying constantly and very nervous and worried about the upcoming biopsy result.
The wait has been so brutal...Hope fully by the end of this week or even sooner, we will have the report. I will keep posting here. I hope this all turns out just a bad dream.

Nels, thank you soo much for your offer. I would be more than happy to talk to you considering your recovery from a stage 4 SCC. That would really help me out.