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#195594 01-15-2018 10:16 AM
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Hi everyone! I should introduce myself in this post.
My mom was recently diagnosed with base of tongue carcinoma at the age of 52 and my family's world has been turned completely upside down.
I'll try to go through the big steps so far. She had the very severe mandibular swing surgery in November along with a radical neck dissection on her right and selective neck dissection on her left. Considering how brutal that surgery is she has made a great recovery. Even the doctors were impressed at how quickly she bounced back (spent 2 weeks total in hospital, she has good swallowing function and talks clearly). After surgery the pathology reports came in and here's where thing get very grim.

Surgery had clear margins, no cancer found in the left side of the neck. Right side showed several conglomarated nodes (matted) with the greatest in diameter being 2.5 cm. Tumour on base of tongue was 3cm in greatest diameter. Signs of perineural invasion. Nothing reported on extranodal extension. At first her staging mentioned T2N2bM0 but this was later crossed out with a pencil (yes.... a pencil) and replaced with T2N3M0 (i guess because of the matted nodes) The doctor was very vague in his prognosis, he didn't give her any stats or number he just said the next step is chemo radiotherapy and he said the goal is still curative in mind. I had to go through her pathology report myself and read a hundred studies on pubmed to realize the severity of her prognosis. I live in Croatia and the hospital system here is extremely slow so we're STILL waiting on confirmation that the tumour was HPV+ (yep, surgery was in November 2017, report still not done yet).

Basically from what I've read my mom's chances.... aren't the best. Can any of you please tell me more? I feel myself completely losing hope and I'm already fearing the worst about my mom whom I love immensely. Is there still some hope for her left? She should be starting her chemoradiation sometimes next week.

I'm studying and working in a neighboring country so I can't be with her as she goes through her next brutal ordeal. Currently she feels fine and healthy and has a big positive attitude about this (like I said before the doctors were very vague about her chances, in fact no one in my family knows how severe this probably is because they didn't bother to read so much about it). I call her on the phone every day and it's becoming soul crushing to keep up a happy voice around her.

Could you please give me some advice how to cope and deal with all this? Am I going to lose my mom?


Son to beautiful and loving mom, 52 years old
Dx BOT T2N3M0 10/2017
Mandibular swing surgery, radical neck dissection 11/2017 - clear margins, matted nodes and PNI discovered frown
Tx neodajuvant CRT should be starting in 01/2018
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Posts: 1,275
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Welcome to the forum. I’m sorry that you have to join our circle of friends.

At this point, whether it is HPV positive or not probably won’t change the treatment. What you may want to focus on instead is to support your mother during chemo and rads. Do impress on her the importance of staying hydrated and to watch her intake. That often makes a lot of difference to her comfort as she goes through treatment. Her positive attitude is definitely a plus. I would suggest talking to your family about caring for your mother — for example, doing saline soaks while she’s going through rads, getting ahead of the curve with the use of anti-emetic medication before she’s weakened by nausea/vomiting while she is doing chemo. If I were you, I would find out if I could talk to the doctors directly (on the phone) and ask the questions I would want to ask. Your not being at home shouldn’t mean you can’t be informed and be hands-on. If the doctors can’t talk to you on the phone, then write down your questions and get someone else who accompanies your mother to her medical appointments to ask them. My experience tells me that it is often difficult to get others to be as informed as the main caregiver. I guess part of it is the fear of looking at a dire situation directly, part of it can also be they don’t want to upset your mother. It doesn’t necessarily mean that they don’t care. We all react differently when we are faced with a serious illness like oral cancer. Stay focused on what you can do and take it one day at a time.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Thank you for your response gmcraft. You are right, the HPV status won't change her future treatment (she's probably going to get 35 rad sessions and 3 doses of cisplatin, waiting on her followup CT scan to be completed this week before concluding) but I still kinda hope that an HPV diagnosis would imply her chances of making it are higher.

What is anti-emetic medication? Is that for nasuea? I've already talked with my brother (he's going to be the main CG since he still lives at home) and her about staying vigilent about her calorie intake and doing all medication on time and informing her doctors with every possible symptom she notices. The rest of the family members can't really research a lot because they don't speak English (and sadly most cancer info is in english). My brother is kind of refusing to read up in too detail because I think he doesn't want to lose hope. He was already upset that I spend so much time reading up on this because he thinks it doesn't change anything except that it makes me a nervous wreck.

I just find all this tough to bear because I could have never in a million years imagine that I could lose my beautiful mom in my 20s. Half a year ago the future seemed so bright and now it's anything but.


Son to beautiful and loving mom, 52 years old
Dx BOT T2N3M0 10/2017
Mandibular swing surgery, radical neck dissection 11/2017 - clear margins, matted nodes and PNI discovered frown
Tx neodajuvant CRT should be starting in 01/2018
Joined: Oct 2012
Posts: 1,275
Likes: 7
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Anti-emetic meds are for nausea. Some people hold off taking it until they are actually vomiting. I have been told that that’snot the best way to go about it as once the vomiting starts, it is difficult to keep the meds in the patient and so they are ineffective.

I think I understand how you’re feeling — when my husband was diagnosed, he was a stage 3/4. The doctor was not specific about it but it sounded really like bad news to me. Surprisingly, John seemed to have blocked that out. He never thought it was that bad. So, there I was, thinking about the “what if’s” on my own. Eventually, I felt that that kind of thinking would not sustain me through what looked like a really long slog. I decided not to be scared about the “what if’s” since they might or might not happen. I was determined to deal with the problems when they arose and not before. Taking the problems one at a time, in small doses, made it easier for me to cope. It also allowed us to deal with the subsequent treatments with humoour. I know, it sounds odd, but having a sense of humor helped John to take the setbacks in his stride since I wasn’t constantly stressed out. Having to wait in the doctor’s office for an appointment, waiting for the chemo nurse to come round with the medication, waiting for the blood test, etc were much easier to handle. I was also very well organized and I think that gave me a sense of control (of what I could control and not what I couldn’t control). I was on this forum constantly and I found a lot insightful advice which helped me immensely.

I hope sharing this with you will help you cope. Do keep us posted of your mother’s progress.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Ah I see well I've already talked about this with my mom and my brother, to really track how she takes her meds and to report all symptoms to her oncologist as she goes through treatment.

I'm so sorry that John did not make it. It's truly terrible what this disease does to people and their families.

I had a mini panic attack today so I had to ask for some free time off work. I was thinking of maybe getting some counseling if these bad feels and thoughts don't go away.

I've discussed my fears with some of my family members and they've all been adamant that I should stop reading studies and statistics, they're things that I don't have control over. I think they are right, I just wish I had their strength of mind. Luckily my mom is doing very well currently, she's not in too much pain or discomfort, she's eating well and just had visited her hairdresser today. I wish I could be there enjoying these peaks with her because they're definitely not going to last once she's in full treatment. I have to make my mom proud, no matter what happens. I have to focus on the things I do have control over and things that can bring her joy (seeing me graduate).

Once again thank you for your posts gmcraft. I'm 24 and none of my friends have experiences with cancer of really close relatives (and i hope they never do, it's terrible to face the inevitable mortality of your loved ones at a young age). Talking to someone who understands is very helpful.

Last edited by PortSpan; 01-16-2018 12:29 PM.

Son to beautiful and loving mom, 52 years old
Dx BOT T2N3M0 10/2017
Mandibular swing surgery, radical neck dissection 11/2017 - clear margins, matted nodes and PNI discovered frown
Tx neodajuvant CRT should be starting in 01/2018
Joined: Jan 2018
Posts: 3
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Posts: 3
I can imagine how hard this is for you but don't lose hope..Our cases are quite similar except my nodes came back negative. I was left with the of my tongue. Do not read anymore statistics, etc., as they don't apply to everyone. I, too, had chemoradiation, and though it wasn't fun, it was manageable. So, enjoy your Mom, encourage her and applaud her after every treatment. The chemoradiation destroyed what was left of my cancer as I had perineural and vascular invasion. And there are other treatments coming up such as immunology. So, enjoy your Mom. She's on the road to recovery! I have spoken to stage 4 survivors who are still going strong after 20 years so you see, statistics are just that... statistics. Feel free to email me if you have questions or need to vent. Blessings.. Tina


I'm so thankful to be alive! I want others to know there is always hope, even in the direst circumstances. My tongue cancer was agressive and ⅔ of my tongue was removed. I was told I'd never talk or eat again and, I am able to do both. Yes, it is difficult, but doable! So, always have hope! 😊
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Tina thank you for your kind words. I don't wish to be rude but cancerous nodes can be a big predictor of progression in this disease and I have seen very few posters with an N3 diagnosis like my mom here which isn't exactly encouraging.
I'm sorry that you had to go through this battle and I wish you many many many more years of health and that this beast never bothers your life again.

You are right thought. No one benefits from constantly thinking about the worst case scenarios. She went in today to get her mask ready for radiation, I think it starts next week. I hope she'll reach the position you and many other survivors here are at and that she still has many more years left to enjoy her life (and see some grandkids!!!). I admire the strength and courage of everyone who has gone through this and who is currently going through it. You are all wonderful people whom life gave a shitty hand but it doesn't have to be the end, far from it.

Last edited by PortSpan; 01-18-2018 06:43 AM.

Son to beautiful and loving mom, 52 years old
Dx BOT T2N3M0 10/2017
Mandibular swing surgery, radical neck dissection 11/2017 - clear margins, matted nodes and PNI discovered frown
Tx neodajuvant CRT should be starting in 01/2018

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