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Father diagnosed with epiglottal and lung cancer
Bell1!
6 Posts

Good morning everyone.

I am so grateful to find this group and my heart goes out to everyone on here! I am here because my 69 year old father learned he has throat (epiglottis) and now lung cancer, and will be starting his 6 weeks radiation at Princess Margaret in a couple of weeks. He is scared, and so are we. He is trying to quit smoking and is feeling overwhelmed by the process. I am the only child in the region who is caring for my own daughter and want to support him as much as I can.

Yesterday he said it would be helpful to speak with someone with lived experience. To be able to ask questions about what the realities of the treatment is, what to expect, the highs/lows, and what the outcome was (he may need a voice box). I'm not sure if this is where to go to ask if there is a peer-to-peer telephone support contact where individuals can connect to chat? My dad is not technologically savvy. Any feedback/thoughts/connections that I can share would be very appreciated.

Thank you so much!

12 Replies

Hi @Bell1!

Welcome to our community! We are here for you and your Dad! How lucky is he to have you helping him navigate this. I'm sorry to hear about his diagnosis. It is great to hear that you know the treatment plan already. Hearing from others who have been there can be so helpful.

You mentioned your Dad would like to quite smoking. We have some great resources that can help:

Call our Smoker's Helpline @ 1-866-366-3667 it is a free, confidential service operated by the Canadian Cancer Society offering support and information about quitting smoking, vaping and tobacco use.

Help someone quit (smokershelpline.ca)

I want to quit (smokershelpline.ca)

To talk to someone who has had a similar diagnosis we have our forums here or our Cancer Information Helpline can look up telephone Peer Support services for him. You can reach them by calling 1-888-939-3333. They are also a great resource if you have questions about treatment or the diagnosis.

Is your Dad experiencing any symptoms right now?

I hope you find this info helpful!

Lacey

Bell1!
6 Posts

Thank you so much for this, Lacey! I am calling them as we speak. It has been a lot of puzzle piecing together and have found that navigating resources and knowing who to contact is a challenge. He lost about 45 pounds over about 5 months, and has trouble swallowing. He is tired all the time. The doctors have been trying to encourage him to eat and gain weight, but it has been hard. All of his brothers and sisters (6) passed from a form of cancer, and it has been hard for him to keep hope. I appreciate these resources! And this forum of support!

Whitelilies
1200 Posts

@Bell1! Hello and welcome from ON ! I am sorry to hear of your dad's diagnosis…..please know that Princess Margaret Hospital, is World Renowned….I have found a link, see below, and hope it is helpful.

Keep sharing here with us……we are here to support you, and your dad.

Bell1!
6 Posts

Thank you so much for your kind words for the links! I have read your posts and am sending you so much light and positive vibes as well. This forum is so full of hope and information. I have shared how amazing this forum is which my dad and am hoping to teach him how to use this forum too! He heads down to Princess Margaret to meet with the dentist on Friday and has his full body PET on Thursday (the one he is most scared about). He finally started switching to using the JUUL. Sending light and love to everyone here!

law1
511 Posts

Hi @Bell1!

It is very wise of you and your dad to prepare questions and learn how supportive this site is. I am remembering the fear I had before my PET scan, before treatments, and even before a specific diagnosis.

The dental appointment is crucial, as treatment for epiglottal cancer will most likely affect the head and neck areas of his body – and it is imperative to maintain strict oral hygiene practice before and during treatment. After treatment, the dentist will want to again examine your Dad's mouth to see any changes.

Because I received radiation for my tongue cancer, my teeth and gums have shown decay---so my dentist is helping fill cavities. I had no cavities or decay in need of medical attention prior.

@Whitelilies and @Lacey_Moderator have indicated excellent reference links and you will be glad to have this site at your disposal.

Bell1!
6 Posts

This is so helpful to know and I appreciate you sharing your story with us! This is exactly where my dad is at mentally right now. The waiting for the PET is causing so much anxiety and he just wants to know “the plan”. He is also feeling defeated hearing people in his apartment building comment on how much weight he has lost and how ill he looks. I know he is scared that the PET is going to show different results as well.

Did the doctor meet with you right afterwards? Or did you go back down the following week for a consult? Will the PET show a different treatment plan than what was already discussed at his consult?

We are also trying to connect with a Social Worker. Both my parents are on a fixed income for years. My mom is on disability and so is my dad. Their social circles are small, and we live about 1 hour and a ½ from Toronto. The number of appointments in Toronto seems so overwhelming and I know my dad is so worried that eventually the reality of getting to Toronto will be too much of a challenge and will just end up cancelling his treatments. The “just figure it out” mentality just isn't a reality in some scenarios and seems so daunting. I have connected them with Wheels of Hope, which is such a wonderful resource, but know that the rides are not guaranteed.

Transportation and lodging is a huge stress right now as their resources are very limited. The Lodge at Princess Margaret we heard is closed. The Social Worker is away for a week, and I was wondering if anyone knows of other supports they can access? I tried calling Red Cross, however they are also experience increased capacity.

I know I am asking a lot of questions, and appreciate everyone's support!

Sending support and positive vibes!

Amanda

@Bell1!

Amanda,

You have so many great questions! Your parents are lucky to have you looking out for them!

Our Cancer Information Helpline can give you info about what to expect re: PET scan and can look up transportation and lodging services for you! Please give them a call 1-888-939-3333. They are so helpful! I know our members here will also share their experiences.

There also is a Social Worker free of charge available at the hospital! Ask at their next appointment.

This is a great place to ask questions, keep them coming!

Lacey

Whitelilies
1200 Posts

@Bell1! Hello….I was looking at the Princess Margaret Hospital site….and wanted to share this, for you:

Find Out More About Income Assi​​stance

Talk to a social worker to find out more about income assistance.

You can ask a member of your health care team to arrange for you to see a social worker. You can also call the Psychosocial Oncology clinic at 416 946 4525 to arrange an appointment.

Money Matters is a free resource offered by Wellspring. A Money Matters Case Manager can help answer your questions about money related to cancer. You can call 416 961 1928 to make an appointment.

Learn more about the Money Matters program offered by Wellspring »

Bell1!
6 Posts

Thank you so much, Lacey! They have a radiologist consult on Tuesday. Would this be something they can request during this time? :)

Bell1!
6 Posts

Whitelilies This is amazing!! I will share this with them today! I appreciate you sharing this :) Also, my daughter's name is Lily!

law1
511 Posts

Hi @Bell1!

Questions and answers and good leads….such a wealth of info from the folks here who want to put you more at ease. You are so loving to care for your folks, to ask pertinent questions, and the info in the posts are a head start for you!!!

The PET scan is a tool for the oncology team to pinpoint the exact area/s of the cancer, where to aim and determine type and strength of the radiation, and it adds clues as to which treatment plan to implement. It is a diagnostic tool which will ‘read’ your Dad's body and highlight the areas of cancer which are illuminated on the technologist's computer screen. Usually a dye is injected into the patient for the highlighting purpose and this will be explained if you ask.

Keep posting us and utilize the resources mentioned by the replies above.

law1
511 Posts

Hello again @Bell1!

I forgot to mention that the PET scan results are interpreted and discussed by the medical team….before the results are given to you. It can take a few days, a week, or however long or backed up the doctors may be. This is an overbooked hospital system we are living in and Covid has added more to the load.

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