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!
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.
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!
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!
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!
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.
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!
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!
@Bell1! Hello….I was looking at the Princess Margaret Hospital site….and wanted to share this, for you:
Find Out More About Income Assistance
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.
- Find out more about social work at Princess Margaret
- Find out more about the Psychosocial Oncology clinic
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.
Thank you so much, Lacey! They have a radiologist consult on Tuesday. Would this be something they can request during this time? :)
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.
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.
Thank you so much for sharing this information with me. I'm sending positive vibes and wishes your way. I never considered how much so many parts of the body are connected. Dad had his consult on Friday and they called me into the appointment. The dentist had to take all of this teeth out. I know it was shock for both dad and my mom as they made the decision in the moment to remove them all so dad can heal as much as he can before radiation. Everything seems to happen so fast. How are you doing? Do you know if the face mask they mentioned will protect his jaw during treatment?
Reading your posts and questions for me are very important. I am glad your father's teeth were removed---shocking, isn't it? But, without such precautionary dental treatment, his jaw bones and gums would have begun to die (atrophy)----very, very dangerous. My teeth were healthy prior to radiation in the head and neck areas…..post cancer I now have cavities, and some of the upper teeth will be extracted. I LOVE my dentist for his wisdom and skills, and how he is saving me from oral decay and dead jawbones.
Following my PET scan, I was given the ‘NED’ dx…No Evidence of Disease. However, the lower jaw bone and teeth took the brunt of the zapping. I did wear the mask during radiation as it is used to keep the head and neck absolutely still….otherwise, the rays would miss the target. It is very macabre when it is worn and the techs snap you to the scanning board! I was not claustrophobic, and I now wear the mask for a super scary Halloween costume!! People love it (after their initial shock).
@law1 I cannot thank you enough for sharing your honesty and feedback. And I apologize for all of the questions. It was a huge shock for my dad and mom. The doctors told us what you had said that the risk of his jaw bone dying was too high. Dad is so confused and feels like there is no time to process anything…it is happening so quickly and slowly at the same time if that makes sense. Did the radiologist share what creams would help with the skin? Will they give my dad preparation instructions? I have been sharing everyone's feedback with my dad, which has been so helpful. How long after you stopped radiation did you begin to feel better? His doctor has advised that the two weeks after his treatment stops will be when he needs his army, but I am not sure what they mean? Is this a scenario where you feel much worse before better?
The other question I have is whether he will be able to have the energy to walk during treatments? I ask because he has his radiologist appointment at Princess Margaret this afternoon. We learned from the social worker today that the lodge is closed, and the partnering hotel is about a 20 minute walk (he uses a cane). There is no shuttle. They are connected with Wheels of Hope because they do not drive but am not sure what the supports are for transportation when you stay out of town for treatment @Lacey_Moderator
Also, in terms of emotional supports, what did you feel was most helpful? I want to help dad as much as I can but understand his experience and what he needs as the patient is probably much different than what I vision.
Sending you and this online family positive vibes and hope!!
First and foremost, “everyone is different”. This is spoken by the oncology team as it is very true. As each human being has a different immune system, everyone with cancer has a unique manifestation, treatment and reactions mentally, emotionally, and physically.
Some folks never have pain at any time during dx, treatment, or recovery; nor have difficulty with eating, or mobility. Cancer is a very strange disease. Some folks really suffer. Usually, radiation discomfort is the worst a few weeks after treatment, as the effect on the body is cumulative — much like a sunburn, but on the inside! It can hinder bodily functions….or maybe not. Because my tongue was blistered, it took me a few months before I could feel improvement….but, everyone is different.
Your father's medical team will have suggestions for creams or nutrition, and housing/transportation is a toss-up during Covid. Perhaps there is a social worker available who can advise you and your father? Additionally, support during this time comes in the form of YOU, his family, friends, social worker assistance, library and online research via Mayo Clinic, Princess Margaret Hospital, and on this site under ‘Resources’ as indicated on the yellow bar at the top of the page.
You are doing a great service just by asking questions!!!
I wish I could share update messages and apologize for the delay in response.
Dad's PET results came through, and the staging was higher than we hoped. The doctors at Princess Margaret were honest, and the treatment which would have resulted in the best odds they said dad would not make through because of his other conditions. His option now is 5 weeks of radiation. Everything is happening so fast. And we are rallying behind him, but he is feeling so defeated.
Everyone says take each day as a win.
Sending light and love to all!
Thanks for checking in, @Bell1! , although it is understandable that you and your father did not receive the news you had hoped for. You are brave to post with the news as many folks on this site have waked in your footsteps. PET scans are very good tools, whether showing favorable or challenging results. 5 weeks of radiation, at the very least, are an oncologist's positive plans for some treatment. Miracles do happen, and in retrospect, everyone on Earth has never been able to foresee their future….or the future of their newborn baby, or the future of a brilliant athlete who has been stricken in their prime. Uncertainty can be unnerving…yet it still motivates us to hope for the brightness of our future.
You may want to phone a toll-free line where any subject regarding cancer may be discussed privately. 939-888-3333. If you have tried this already---- phone again! The folks on the phone are supportive, helpful, and always patient.