Concerns and Seeking Guidance on My Father's Post-Treatment Complications

ali90h7

I'm writing to express my deep concerns and to seek guidance regarding my father's prolonged and complex battle with squamous cell carcinoma. Here's a chronological account of his treatment journey:

1. **Initial Discovery**: Squamous cell carcinoma was detected on his right vocal cord. The tumor was successfully excised using laser surgery.

2. **First Radiotherapy Course**: Following the surgery, he underwent 28 sessions of radiotherapy.

3. **Tumor Recurrence**: Unfortunately, the tumor re-emerged six months later, prompting a total laryngectomy accompanied by a tracheostomy.

4. **Further Relapse and Chemotherapy**: Six months post-laryngectomy, the cancer resurfaced below the lower jaw, measuring 1.9 cm and adhering near the esophagus. Subsequently, he underwent three cycles of chemotherapy (consisting of cisplatin, Taxotere, and 5FU) every 21 days. This treatment regimen reduced the tumor size to 1.1 cm.

5. **Second Radiotherapy Course**: He was then treated with radiotherapy using IMRT technology, spanning 33 sessions. This treatment targeted both the tumor and the lymph nodes on either side of his neck.

Roughly two and a half months post-radiotherapy, my father started experiencing numerous adverse effects. He's in persistent pain and heavily reliant on painkillers, with pronounced pain in the tumor region and dental gums. Tragically, many of his teeth have turned necrotic, and he's lost a significant number. His swallowing ability has transformed; he struggles and the act feels unnatural compared to before. Notably, he's developed swellings on both sides of his neck and underneath his right jaw. These swellings sometimes extend below the jaw, only to recede later. Both our radiologist and neck specialist suggest this might be lymphedema resulting from radiation exposure. Half of his neck region has turned conspicuously hardened and swollen. Additionally, a salivary gland malfunction has caused a persistently dry mouth, with the glands beneath his tongue appearing inflamed and reddened.

Although I've requested diagnostic tests to ascertain the root cause of these symptoms, the doctor advises waiting until three months post-radiotherapy to avoid potential false results. My predominant apprehension is that the swelling, especially on the side opposite the primary tumor, isn't mere lymphedema but signifies another malignant growth. If accurate, this might mean tumors are encircling his esophagus.

The myriad of symptoms, coupled with the periodic swelling reaching up to the ear and then receding, has left me profoundly anxious. I am earnestly seeking guidance, insights, and second opinions.

Thank you for your attention and consideration.

Sincerely,

ALI

wbcgaruss

ALI, I am sorry your father seems to be one of the lesser number of individuals who keeps having cancer come back as a recurrence or new cancers. I myself have had cancer 3 times.

I also suggest you look at the Superthread at the top of the main head and neck page, it is a read-only you can't post to it but there is lots of information and links in there and you may be able to find some answers in there.

And as you can see multiple treatments and operations and radiation takes their toll on the body.

I think your father needs a little closer attention from his care team but they don't seem to do much else at this point.

I think a second opinion would be helpful at this point so you may want to get one if your father is willing. I hope you are working with an ENT and your father should be evaluated by him as soon as possible.

With his teeth turning necrotic you want to have him evaluated and under the care of an oral surgeon.

I think since there are multiple things going on here his care team should be guiding you in the right direction and have a hand in getting him the right treatment and referring you to doctors for all these effects. If they can not do anything more at this point they should be open and tell you that. Your doctor is right if you do CAT Scans or PET scans too soon after treatment it may give false positives but in this case they may want to do it sooner and make an exception. Whatever time frame they can speed it up to. I would also mention to your care team the possibility of Palliative care. They say it helps patients be more comfortable, relieve stress, etc. It would bring your father comfort and help him feel better. The good thing about Palliative care is he can continue to receive treatment.

Palliative Care Definition

The definition of palliative care is compassionate comfort care that provides relief from the symptoms and physical and mental stress of a serious or life-limiting illness. Palliative care can be pursued at diagnosis, during curative treatment and follow-up, and at the end of life.

https://www.vitas.com/hospice-and-palliative-care-basics/about-palliative-care/hospice-vs-palliative-care-whats-the-difference

https://www.youtube.com/watch?v=Y4ZsucFf41Q&t=33s

I hope you can find solutions and help for your father he is certainly going through a tough time.

Pray a lot, prayer is powerful, pray, pray, pray.

May God watch over you and your father and Bless you greatly.

Our motto here is NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, God Bless

Russ

ali90h7

Tomorrow there will be a PET CT scan and then an MRI of the neck. There is an appointment with a neck doctor to see esophageal strictures, and an appointment with a radiologist to follow up on side effects and

wbcgaruss

Ali, Prayers for you and especially for your father with respect to these scans and MRIs and the follow-up appointments with the neck doctor and radiologist for the best possible results. Praying for good positive results for your father.

NEGU (Never Ever Give Up)

Wishing You the Best

Take care, God Bless

Russ