Update - Possible NED - Thoughts?

jkkc61

Hey all,

It’s been some time but wanted to provide an update and get some perspective!

My mother (61) completed chemotherapy (cisplatin) and radiation (70Gy) on 14 February. She had one full dose of chemo and then a 3/4th dose because she was pretty ill (hospitalized with peg tube placed) in later weeks of treatment. Three doses of chemo was the hope, but, to my understanding, chemo doesn’t make that much of a difference compared to the radiation, which she did all the radiation.

Her first CT was 12 April. The impressions were:

”Evidence of treatment response with resolution of previously seen enhancing left palatine tonsil mass and decreased size of multiple left upper cervical lymph nodes.”

One of the nodes didn’t reach the standard they wanted so they did a fine needle biopsy and it came back negative for malignancy.

She then had her first PET/CT on 19 June. The impressions were:

”Marked interval decrease in size and metabolic activity of the left oropharyngeal mass. Mild residual oropharyngeal activity may represent posttreatment inflammatory changes versus minimal residual disease. Near complete anatomic and metabolic resolution of the left cervical metastatic lymph nodes.”

Her oncologist confirmed they believe the activity to be inflammation and said they already know the node is negative because they recently did a biopsy..

Has anyone had this inflammation uptake as well?

Today, she just had a fiberoptic scope with an ENT. They said, “The nasal cavity, nasopharynx, oropharynx, hypopharynx, and larynx were evaluated. No masses or lesions. No evidence of recurrent disease.”

However, she has a little sore on her soft palate. She believes it’s a canker sore and the ENT said, “5mm round superficial ulceration at left soft palate, tender to palpation, benign appearing.”

Has anyone experienced canker sores months after radiation?

We really just want this rollercoaster ride to come back into its station and move on with life NED!!

I’d appreciate any insight.

Thanks, all!

-C

wbcgaruss

First of all, thanks for checking back in after this nasty battle and updating us on the situation.

First I would like to say as far as the sore on the soft palate for the longest time it will seem to your mom that every little sore or oddity up around the head and neck area will set your mind to thinking--Cancer? All the normal stuff like waking up with a stiff sore neck, a sore on your gum in your mouth, a headache, an earache, anything, all the normal stuff your mind will go right to cancer. Just get your thought process back to pre-cancer times. Oh, I woke up with a sore neck, Oh well probably slept in an odd position. A sore spot in your mouth, cheek, gum, etc. will most likely send your thought process to cancer but treat it as non-cancer.

Unless it Persists

That doesn't mean ignore it though, if you have something such as a sore spot in your mouth and say you are treating it with Over the Counter meds and it continues to persist and not go away or respond to treatment get it checked, and see your ENT. It is better to be safe than sorry and that is what your doctors are there for. And I think that once we have cancer we are a bit more susceptible to A. getting a recurrence and B. getting a new cancer. So absolutely don't take any chances but don't go into a panic every time somethings a little sore or odd feeling.

As far as canker sores months after radiation I would say they are possible among a myriad of other possibilities for the Head & Neck patient. Please note I said possibilities because though there are long lists of possibilities post-treatment many of us never experience most of them and many times to a mild extent that we can deal with. Once treated for H&N cancer the radiation can affect you down the road because radiation makes flexible skin and tissue stiffer and the aging process adds in as you get older.

Here is a link to a page from Oncolink giving an overview of possibilities--

https://www.oncolink.org/support/survivorship/health-concerns-after-cancer-treatment-late-effects/survivorship-late-effects-after-radiation-for-head-and-neck-cancer

And lastly, ask your doctor directly about the scans. I don't understand a lot of the terms and references on a pathology report or understand a person explaining it using those technical terms. It has been said on here many times that the first scans that H&N patients get can light up in areas and spots but there is nothing there and nothing ever came out of it even though a spot showed up on the scan they were closely watched and no problems ever occurred out of it. Folks on here called these areas FALSE POSITIVES. In the past many times, people would get a PET as a 3-month follow-up or a little longer between it depending on your doctor, I see your mom is about 4 months. I have seen members on here state they felt a PET scan should not be given until 6 months or later due to the possibility of false positives. But all that is up to your doctor's discretion, go by what he says.

In case anyone is interested here is a page link that tells you how to read a pathology report--

https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/reports-and-results/reading-pathology-report

So just ask your doctor about the scans, do you see cancer or anything that looks like it? He will probably tell you no but there might be an area that is a bit different or not everything may look fine. Look, they view scans for a living. If they don't see anything that is cancer then the cancer is eradicated and you can go on and feel relieved and just do the regular protocol of follow-up visits and scans and you will be well monitored and go on and go forward and live your life. Your treatment regimen was designed and applied to eradicate your cancer and your care team fully expected your cancer to be eliminated.

It's time to move on now and get back to living again and continue recovery which may take up to a year for some people. It takes time to get your energy back but one day your mom will wake up and say"Ya know I feel pretty darn good today". Enjoy your victory battling the beast and coming out victorious.

I celebrate with you

Wishing You The Best

Take Care, God Bless-Russ

jkkc61

https://csn.cancer.org/discussion/comment/1706758#Comment_1706758

As always, thanks for the insight and positive perspective, Russ!