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How / When to tell my mom?

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

Sorry for the length of my post or any spelling errors. I am new here and wanted advise on telling my mom that I have tonsil cancer. I am a 40 year old, single,non smoker, rarely drink just diagnosed with Tonsil cancer with right neck metastasis. I received the initial call from my ENT on July 8,2010 after a ultrasound guided needle biopsy of an enlarged lymph node in my neck indicated there were METASTATIC POORLY DIFFERENTIATED SQUAMOUS CELL CARCINOMA WITH EXTENSIVE NECROSIS found in the lymph nodes in my neck. He referred me to MD Anderson for further testing, diagnosis and treatment. I have a huge support system of friends though I live in a different state than my mom and sisters, we are a close family. I am not sure how to tell my mom and am looking for how others have told family / friends / loved ones of their cancer? So far each time I tell a friend / family member I wonder did I do it in a compassionate way or could I have said it better.

A little history:
At the same time I received my initial diagnosis my mom was planning a month long trip to visit my sister and nephews who live overseas. My brother in law is in the airforce and currently deployed in Iraq, so my sister and her two boys are living on base in Japan. Originally, my sister and nephews were supposed to come visit the states and stay with my mom and I was going to fly up to vacation with them. Well, due to some issues and the news that my brother in law would be returning from Iraq this summer my sister changed her plans and instead they bought my mom a ticket to visit them in Japan end of July - August. I am thrilled for my mom to go on this trip as she had not seen my sister and her boys in a couple years. Plus it is a trip that was delayed from 2003. In 2002-2003 my brother in law (and sister) were stationed in Okinawa Japan and as my dad had COPD / heart condition my dad was going to come visit me for Thanksgiving 2002, while my mom went to visit my sister, her husband and then 4 yr old son in Japan. Fast forward and my dad's condition declined in October and his trip to visit me was cancelled. Then in November I got the scary call to come home immediately as my dad was in ICU and not expected to make it. My mom had cancelled her trip to Japan, I flew up to be with my mom, dad and sisters and prepared myself to say goodbye to my dad. He shocked all the doctors and medical staff and survived the heart failure / kidney failure that time. While my dad could not come visit me as planned, my dad rebounded and he was with us until April 2003 when his body again started to shut down. I spoke to my dad on his birthday April 6, 2003 and he told me he was just tired of the fight and he said he felt he lived a good life but it was time to say goodbye. I immediately took off work and flew to be with him, my mom and sister as I knew in my heart that he did not have long and it was his way to prepare me that he did not have much time left with us. We said goodbye to my dad April 22, 2003 when his heart / lungs / kidneys gave out. While I miss him every day and think of him every time I do a project on my house I know he was at peace with it being his time and that his body was shutting down.

So when I got the cancer diagnosis from my ENT knowing my cancer is hightly treatable unlike my dad's health condition...I felt like it would be deja vu of the worst kind for my mom if I told her on July 9th then she would have cancelled her trip. Plus, I had yet to have the initial diagnosis confirmed and maybe was in a bit of denial myself. I wanted my mom to go on her trip and have fun so when I really need her she could be here for me.

Since July 27th I have been examined by a team of oncologists and had a series of tests, most recently a exam under anaestasia which involved a biopsy of my right tonsil and resulted in removal of my left tonsil (which I did not realize would happen so soon). I am waiting on the results of the biopsy and meet with my oncologisits this week on Monday / Thursday to discuss my treatment plan and have follow up from the tonsillectomy. I am on pain meds and find it hard to speak due to the pain. Last night I got a phone message from one of my sisters (I have told 3 of my 5 sisters) and in her message she tells me "I have tell my mom as she (my sister) cannot keep it from my mom any longer". I was planning telling my mom my diagnosis after I got the results of the biopsy and met with the oncologists about the treatment plan. Suffice it I know I need to tell my mom but I wanted to find the right way to tell her so she won't go cancelling her trip and flying home immediately. I am sure others experienced this fear of telling a loved one of a cancer diagnosis, at the same time I am overwhelmed with all that is going on... an added stressor is that I found out last week that the older of my two dogs has an aggressive bone canceer - osteocarcinoma of the shoulder and while I am able to manage her pain the cancer my dog has is so aggressive give her age it is not curable.

So while recovering from the tonsillectomy, taking care of my dog I needto find the right words / right time to tell my mom. Any suggestions?

I appreciate the wisdom of those who have already experienced what I am in this initial step.

I apologize for the length of my post in future I will try to be so rambling and wordy. I am sure it is lack of proper sleep and pain meds.

Thanks for listening.

~ E

Scambuster's picture
Scambuster
Posts: 975
Joined: Nov 2009

Sorry you had to join our club, but welcome to a great bunch of people and support network.

I had a similar case to yours, SCC of the Left tonsil with some activity in 2 nodes. I had surgery like to excise the tumor where my tonsils were. I also has a similar dilemma with telling the family and finally called them 30 minutes before I went into surgery. They are all home in Australia as I am an Expat in China. I suppose if you imagine your mom was sick and whether or not you would prefer to know - what is your answer ? I would think you would like to know so I think she would appreciate knowing. Just make it clear you are doing fine and will see her when she gets back if that is what you desire.

There is really no easy way to tell her but I just said I had a small tumor on my tonsil and that they would cut it out and then just to make sure, hit it with some rads and Target Therapy (Erbitux). My Dx was 1 year ago this week. If your mom is with yr sister, she has good support and so long they are all in the know, and help to keep her on her vacation. No one ever want to hear that one of their kids has cancer, so it will still hit her hard regardless, there is no way around that E. She will come to grips with it and learn that you have a good prognosis and that you got it early and should make a full recovery.

As for your next step, I would imagine they will 'stage you' to determine the level of any Mets and then discuss the best plan of attack. You may be recommended to have more surgery if the nodes show a high uptake in your PET/CT. Then it will normally be radiotherapy and that would now normally be IMRT. That usually goes for 7 weeks (even if they tell you five). Simultaneously. there will most likely be some regime of Chemotherapy - maybe a cocktail depending on your team. I had Erbitux once a week.

While surgery of the tonsil is rough and very painful, the treatment can also get tough and is more drawn out. We all react differently.

Let us know what your Docs say and the gang here will load you up with their experience and wealth of knowledge. Just keep firmly in your mind the end game, and that is recovering from this ***** of an interruption to your life.

Stay positive.
Scam

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

I couldn't say it any better than Scam did. I understand your feelings of not wanting to tell your mother and your reasons for not wanting to.

It's been a year since my diagnosis of SCC laryngeal and NSCLC in my left lung and I can remember it like it was yesterday. I didn't want to tell anyone in my family because we had just lost my brother to lung cancer and I knew it would bring back the fears and pain. After getting over the initial shock and fear I decided I had to tell them because I knew that I would want to know immediately if any of them were going through something this horrible. I would want to be there for them as I knew they would be there for me. It was tough, the toughest was my daughter, but after a lot of hugs and tears we adjusted to the fact that I had two cancers and was in for the fight of my life. Because I told my family I knew that I was not in this fight alone, they were all there with me.

It's your choice and I know that it's a tough decision to make but I personally feel that telling your mother is the right thing to do. Explain to her that you want her to still go to Japan (if that's what you want) and that you will keep her updated on what's happening. I know she will worry and not want to go but this is her choice also, all you can do is try to convince her that you will be fine until she gets back.

My best to you and your family.

Take care and stay strong,
Glenna

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

E, sorry about your DX and that you find yourself here, but it's a great place for info and support. My DX was for Stage IV SCC unknown primary. I had tonsil biopsies too...sorry about the pain...but it will be better before your treatments begin.

For me, information is power. The waiting and uncertainty of diagnosis, staging and treatment was very hard for us. We (my wife and I )did not tell the majority of our families until we knew the direction I was about to take. We told her parents and siblings via phone-call, my parents have both passed away and I'm an only child-so no calls for me.
I did speak with all my co-workers. The rest of friends and relatives received an email with a link to my CaringBridge website, which explained in greater detail the how, what and when of my cancer. Check out CaringBridge, it continues to be a great way for us to keep all the people we care about informed about our progress.
www.caringbridge.com

Hope you feel better.
Chuck.

johnlax38's picture
johnlax38
Posts: 136
Joined: Aug 2010

Nice to have you hear Dragon. I have found this site a great outlet of information and support. I hope you find it to be the same as well.

To be quite honest with you, I feel its best to be honest with loved ones. Its hard to break this news too anyone, but being open and honest about it will help you and your loved ones deal with the situation better. Do all the research you can first so you can answer questions, some you may not be able to answer until you talk to a doctor.

I did this with my family, it shocked them, but I reassured them I was doing everything possible to get better. The truth can hurt but I believe the truth is the best path. You just need to work on delivering the news as light and as informed as possible.

Best wishes to you.

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

Welcome to the site my friend. I took John's approach and just told them. my diagnosis came about the same time as yours. I felt additional pressure to disclose quickly as my youngest son leaves for college 6 hours away from home next week.

Use the site, take from it what you need now and save th rest for a later date. I have received much "real world" advice from the members here as we all have this one "real thing" in common. Lean on your family and friends and all of us for a while to help you focus on healing.

Best

Mike

RushFan's picture
RushFan
Posts: 218
Joined: Aug 2010

E, my story is very similar to yours. Swollen lymph node, CT scan, needle biopsy. Couldn't i.d. any cancer...so my ENT removed the lymph node and ultimately sent slides to Mayo Clinic for i.d.
Cancer i.d. Squamous Cell Carcinoma. I was then referred to MD Anderson, I live in Cypress TX. My lead doctor then performed biopsies of right / left tonsils and base of tongue. Another CT scan too. Primary was not found.
I had all my treatments (35 Rads, 7 x once weekly Cisplatin-chemo) at the Katy, TX satellite.

All this started in Jan. 2010, finished treatments April 30, 2010.

Best of luck to you, keep on posting...lots of support and knowledge hear.
Chuck.

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

Well, tried to call my mom in Japan twice now..first time they were already out for the day. I left a generic voicemail on my sister's voicemail and asked them to call me back no return call. Called tonight which was 9 am Japan time my sister said they were getting ready to go on a day trip and would be leaving in 50 minutes asked to talk to my mom and she said my mom was ironing and getting ready to leave and she would tell my mom I was on the phone. My sister then got back on and told me my mom said that she was not awake yet and would talk to me in a bit. Since my sister had to go get ready, I spoke to my 11 yr old nephew while I waited to talk to my mom then he said he had to go. I aked him to have my mom call me later.
I really hope they call me back.

My sister is supportive and I feel like I waited long enough to tell my mom so I hope she call me back when they get back from their day trip (early evening Japan which will be early am for me.) If not I guess I will try and call again.

I have to say I am on an emotional roller coaster as a friend of mine here said something to me on the phone earlier that at first I thought was stupid " she asked if I thought my sister resented me telling my mom about my diagnosis while my mom was in Japan" but then now that I am having difficulty getting my mom on the phone I feel like maybe I should be concerned? Or is it all the stress and pain medication I am on that is making me feel like it would have been better if I did not tell my family or friends and dealt with this on my own?

Did anyone else have these ups and downs?

~ E. Cib

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

Like everyone else welcome here to our faimily on CSN

I think we all have that same problems of telling our family we have cancer. My daughter was 6 ½ months pregnant and my wife and I knew we had to tell her at some point. We got all the info we could about my type of cancer and sat down and gave her the truth, we then prayed and talked about it more. I believe that was the hardest for me to do because I had to stay as cool as I could for her.

All the best to you

Hal61's picture
Hal61
Posts: 656
Joined: Dec 2009

Hello Dragons, I'm very sorry to hear of your diagnosis, and also sorry you are having trouble reaching your mom. I'm 4 months out of chemo and rads, and recently finished mop up surgery to remove lymph nodes. I'd urge you not to allow your friend's comment to upset you. You have enough to deal directly with, and shouldn't be concerned with what might be in other peoples' minds right now. Keep trying to reach your mom. She would want to know. It's perhaps the hardest time for you now, but believe that things will sort themselves out once you get a treatment plan, and begin recovery. This is the scariest time.

There is simply nothing to be gained from waiting. There is no advantage for your mom or family, and certainly not for you, by delaying. It must be especially tough on you to have these communication glitches to complicate things, but I agree with your decision to let family know as soon as you can. You will feel better.

best, Hal

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

thanks Hal and others for the words of wisdom.

I am not going to give up and plan to be a little selfish or really do what I should which is take care of myself and not let others' thoughts / negative opinions bring me down. They can choose to support me or then I am better off not allowing them to be a part of my recovery.

I am sure I am just emotional and overreacting. I know my friend has her own issues with her own sisters so it is probably transference. She and her sister have issues so she is manifesting issues for me and mine.

I will perservere in talking to my mom even it is means 1) getting up super early so I can talk to her evening Japan time.

Thinking positive healing thoughts for all.

~. E. Cib

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

Find people who are supportive and positive to be with and stay away from the ones who are negative and non supportive, you are in for a fight of your life and you will need help at times to stay positive. My best support was my wife, children and co-worker.

All the best to you

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Dragon,
Trying to figure out what is going on for your mom and and your sister may be a distraction from the task at hand. I am sure you are extremely nervous about sharing this information with your mother, and while anxiety producing in itself, I am sure it easier to extend energy speculating about what they are thinking. No way around the anxiety...but probably not useful to try to get into thier heads...especially while in Japan.
Your mom needs to hear these words from you, so the two of you and begin to be togehter on what lies ahead.
Keep dialing...well pushing buttons...
Kim

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Sounds like you have pretty much the same diagnosis I had on July 11, 2008. (I was Stage III, FWIW.)
I was the first in my immediate family to have cancer. However, my mother's sister, Jean, had breast cancer -- twice -- and beat it both times. Jean's husband, my Uncle Bill, died of cancer. Jean and Bill had two lovely daughters, Virginia Anne and Barbie. Virginia Anne died of breast cancer in her '40s; her sister Barbie got breast cancer in 2007 but beat it.
I knew something was wrong with my throat in the spring of 2008, but I put off doing anything about it until June 23, 2008, when all of a sudden my throat began to bleed, and bleed copiously. I went to the ER and was told it almost certainly was cancer.
My mother was deeply hurt when cancer took my Uncle Bill, and when it took Virginia Anne it was like twisting the knife that was already in her gut. Not only that, my only sibling died of a heart attack before he reached 40. I thought that telling my mother I had cancer would destroy her.
I waited until the biopsy came in and it was official. That happened on July 11 -- my birthday -- so I wasn't about to tell her on my birthday that I had cancer. I waited about a week and then sprung it on her.
Long story made somewhat shorter, she took it far better than I thought she would. My whole life -- I'm a journalist -- has been devoted to the relentless pursuit of the truth. Once again, telling the truth was the best thing I could do.
Now, two years later, I'm so glad I told her when I did.

--Jim in Delaware

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

I successfully talked with my mom about my diagnosis then told my remaining sisters. There are a told of 6 sisters so have a huge support network.

Now to get them all in line and to stay in perspective. I have explained them this is highly treatable and I will beat this I just may get a sick on the journey but will triumph in the end. They just cannot fly to Texas to 'help' me all at once. They need to wait until I have actual treatment dates, dates I will need their help in Texas.

Thanks all for words of encouragement.

~E. Cib

lady4darknight's picture
lady4darknight
Posts: 90
Joined: May 2010

Dragons,

Sorry about your diagnoses. I know this is an extremely difficult time. I am very glad you were able to talk to your Mom and that your sisters are rallying around you. Telling my family was difficult for me the first time but I called the family to together and just told the truth. But this, I just couldn't find the words to tell my children. They were hoping so much for good news. I called my ex and asked to tell the kids and that I would call them later. Within 3 hrs I had heard from all but one of them (I have 5) and I still have not heard from him as his brothers tell me he is having a difficult time with this because he wasn't there for me the first time. He has a problem with drugs and was in rehab but he is doing well and is 123 days clean. Amen for that. So I understand and he will call when he is ready. I also had to tell them don't come out now, wait till I have a game plan. Your family and friends are important and I hope you know you have a "new" family here who will all be praying for you.

Debbie

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Glad you were able to tell your family. I'm sure it's good to not have that one ball of stress with you any more.

Irishgypsie's picture
Irishgypsie
Posts: 331
Joined: May 2010

Hey, I read your post earlier but didn't post because I was waiting to see the outcome. I'm glad you were able to speak with your mom and the rest of your sisters. Though it was still hard I was able to tell my mom right away; even though she really wasn't able to help much she is 68 and kind of out there mentally! Another story. I wanted to connect with you because yes we all on here have the same thing in common (oral cancer); however our AGE and being single; plus location (tonsil) make it more in common. I think being single made it harder going through this; yes I had friends and some family, but it's not the same as having a wife/husband or girlfriend/boyfriend or partner. Anyway, I am 6 weeks post treatment and am doing much better physically; mentally it's a rollercoaster, some days, good some days i still get pissed off and cry say life isn't fare why me, why now, I never smoked, etc. But I still wake up everyday and deal with it.

I actually will get my feeding tube out next week. Overall, I lost 30 lbs mainly in muscle mass. 5'11 160lbs. Though some did it without a feeding tube; I noticed the ones who were able to do it had the weight to lose! Let me know if you have any specific questions. my e-mail is chased71@yahoo.com I also spend time on the oralcancer foundation blog. They have alot of cancer survivor stories which is nice!!!! Good luck!!
question: Did you find out if your tumor was HPV +16 positive.

Charles
P.S. I was stationed in Texas alot with the Air Force I miss some good tex-mex and the girls are smokin hot!!! :)

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

Charles,

It is nice to communicate with others that have cancer particularly when we have several things in common as you said age, single, location (tonsil).
I also find it hard not having a husband, boyfriend, partner etc. Yes, I have great friends, sisters, co-workers who email and call but it is still not the same.

I do have weight I can spare to lose so maybe the fact that I have been unable to lose weight and hypothyroid will be to my benefit as the feeding tube scares me. Don't know why but it just does. I guess it is also the fear of the unknown.

I did find out my tumor is HPV+16 positive. I'd like to find out more about how one gets a tumor tha tis HPV+16 as I don't live the lifestyle that I would think would give me HPV. Ten again I was told by a nurse and doctor that HPV can be transmitted by various means.

Anyhow, that's all for the moment.

~ E. Cib

PS I am fron New Jersey so miss some real Italian - pizza calzones, gelato from Rita's. By brother in law is in the Air Force and my mom jokes because when he and I visit NJ she can predict the first things we will want to do 1) go to Joseph's for a pizza or calzone 2) go to Rita's for gelato.

ButtonsMom
Posts: 10
Joined: Aug 2010

I had the same thing. My oncologist put me on a strong chemo. Plus radiation. I feel you should tell your mom. It already sounds like you will have a lot of wonderful support not only from your family, but from those who are here too. Me, I wasn't so lucky. My ex-husband was the worst when it came to support. None of my family called or even bothered to see me, even being a state away.

If you have a religion of choice, sit down and talk to your pastor as well. Find some local support groups in your area as well. You are not alone in this. =)

Cancer, of any kind, is a very hard thing to go through. The best thing to do is keep your spirits up and beat this. Don't stop living. It may be hard, there are times you want to cry, and Lord knows I have done a lot of crying (to myself), but remember to laugh. When I was going to my radiation treatments, I always joked with the nurses. Always did goofy stuff. =) And to this day, still do! heehee!

I have survived 9 years, 10 come January, and if WE can beat it, SO CAN YOU. Please stay positive and know that not only your friends and family care, we do too.

Sending prayers and many blessings your way, along with some hugs!

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

I'll bet that's taken a big weight off your shoulders.
Breathe easy. Keep a positive attitude, keep your eyes on the prize and beat the beast.
We'll be pulling for you.

--Jim in Delaware

wifeforlife
Posts: 189
Joined: Feb 2010

honesty is the best policy.. and that power. Best of luck with what is ahead. Share you thoughts with those you trust and care about.. it will be one of the best treatments you receive.

Dragons7-7-2010's picture
Dragons7-7-2010
Posts: 79
Joined: Aug 2010

ButtonsMom,

I am working staying positive moment by moment. Looking for the fun in things. I figure if my hair will fall out from chemo now is the time to get the cute short haircut I always wanted to try but never have. And then the other day went to check out wigs I met a woman who was battling breast cancer for the 3rd time and her daughter was helping her pick out a wig. I told them I was just looking and then we had a blast when they convinced me to try on wigs. It was silly fun and I know for some it may be depressing but we made a party of it if you will. Trying on crazy wigs and joking. I figure if a woman who battled breast cancer twice and was on her third breast cancer can be positive and joke so can I.

If others can beat this so can I. I am using my competitive nature for this.. since I have alwasys wanted to do better than others in school, work etc. I figure why not turn beating cancer into a competition.

Bye for now.

~ E. Cib.

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I was told I wouldn't lose my hair - it would just thin. You can't even tell that I lost some by looking at me. I did cut it shorter because it was to much to shove all my hair into the mask during tx. You meet the most wonderul people hanging out at the cancer center. I always thought it would be a doom and gloom place before. However, it is a very
upbeat and positive. You will meet the most amazing people. Staying positive is contagious.

rozaroo
Posts: 667
Joined: Apr 2010

I did not loose my hair it just thinned out a bit & no one could tell. I have
long hair & am attached to it lol. Radiation at the nape of my neck caused hair loss. However, it is all growing back now. Your rad technician will be able to show you exactly
the field where you will be treated. Cisplatin was my chemo drug & it causes hair thinning. My medical oncologist said no hair colour to be used for six month's post treatment. So I am three week's away to a new me lol!I did not venture too far with three
different shades of hair lol!
Best of luck with your treatment!
Roz

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

I didn't know that about the hair color. The grey seems to be the stuff that is growing back and I was thinking about it - now I will wait a bit longer.

rozaroo
Posts: 667
Joined: Apr 2010

I had a difficult time getting the correct answer. My Chemo Dr simply stated no hair colour. I was bleaching my hair & that is a very harsh process. I finally spoke with a hairdresser that worked with cancer patient's in my city. She told me not to colour my hair for at least six month's minimum. Plus to get my hairdresser to do a patch test before hand to make sure there would be no reaction. If there is to wait longer. Some ladies waited untill one year before colouring. The reason being it can cause Alopecia
(baldness) I am also going to use less harmfull chemicals on my hair from now on. The treatment really dried out my hair so I am going more natural now. It took me forever to find a straight answer. I am also getting a patch test done this week.

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