Previous Thread
Next Thread
Print Thread
Page 3 of 4 1 2 3 4
anxiousmark #190063 06-23-2015 07:32 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Its very very rare to have bilateral nodular involvement where cancer is concerned. Your dr. says they are reactive. Chances are you have an infection. Usually it's one side or the other affected when it comes to cancer. At some point it can jump them midline but at that point I think your symptomology would be much greater.

try not to worry ... hugs.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
anxiousmark #190075 06-23-2015 04:24 PM
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Sophie,
Those were great words that your doctor shared with you.

I hope I can keep them in mind for myself and for others.

xo,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
anxiousmark #190095 06-24-2015 07:29 PM
Joined: Sep 2013
Posts: 105
"OCF Canuck"
Senior Member (100+ posts)
Offline
"OCF Canuck"
Senior Member (100+ posts)

Joined: Sep 2013
Posts: 105
Hi Karri,
What my doctor did for me is take away my sense of responsibility and my illusion of control away with simple words, "have hope".

And somehow when I snapped out of my desperation and very slowly into a lightness of being. I decided to be the best I could be no matter how bad things got with Stephen, and more so I decided to be hopeful, to believe in what felt like the impossible. And the only way to do that is to accept the present state, including which was at the time my very tired state. It might have been foreign at first but I exuded happiness for the sake of feeling and feeling good about myself and the life Stephen and I are building together.

I try my best to be selfless and to love Stephen purely in the now. Because after all it is all that matters in the end.

Sophie


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
anxiousmark #190102 06-25-2015 01:09 PM
Joined: Oct 2008
Posts: 246
Likes: 1
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Oct 2008
Posts: 246
Likes: 1
Thank you Sophie. Have hope, accept the present, love in the now...very wise words.

This is a reminder that I seem to need periodically (actually, over & over again) while dealing with the aftermath of side effects. Have you posted this on the caregiver section?

Lottie



CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
anxiousmark #190105 06-26-2015 04:09 AM
Joined: Sep 2013
Posts: 105
"OCF Canuck"
Senior Member (100+ posts)
Offline
"OCF Canuck"
Senior Member (100+ posts)

Joined: Sep 2013
Posts: 105
Hi mark, I know how overwhelming the wait can be. What Cheryld said about cancer starting on one side is true, so you can take relief in that.

And yes Lottie being present when secondary effects cause harm and stress is a daily challenge. I always tell myself that I am doing all that I can by just being at Stephen's side through every storm. We are so accustom to going to the emergency that it has become a calm routine.

I stay calm whenever possible.
Listen and ask how Stephen is doing so that he never feels alone.
And we hold eachother a lot, it makes for better sleeps.
Life is not what I expected but the shared hardship has definitely bonded us in a profound way.
And when he feels better, I make sure to celebrate by being twice as goofy and twice as funny as I usually am. I make him laugh even when he doesn't feel like it and that make me very happy.


husband 61@diagnosis painter
6/9/13 Exophylic invasive SCC IV(ext.gingivobuccal) 3cm+ mandibular/lytic/erosion, jugular/node9mmshort-axis
17/9/13 Dx(moderately aggressive)
24/10/13 left madiblectomy, mod radical neck disct, leg flap, NGtube
2/01/14 (30 tx)rads 60gy
N2b (2nodes under jaw) (rem. in tiny nerves) (rem. 30 nodes)
Clear margin, close 2mm inner cheek
15/05/14 cellulitis
3/12/14 Chest CT Clear
27/02/15 cellulitis
8/6/15 cellulitis
10/6/15 Osteomyelitis
anxiousmark #190154 07-02-2015 07:29 AM
Joined: May 2015
Posts: 9
Member
OP Offline
Member

Joined: May 2015
Posts: 9
Hi everyone,

Thank you for the feedback. I realize that having swollen lymph nodes on both side of the neck speaks against this particular cancer. I take relief in that....even though now I am afraid that I have lymphoma frown frown....I will speak to my doctor about this.

And as soon as I am in my home country again I will start therapy...I realize that I have a huge problem with health anxiety.

Once again, I very much appreciate all the words you have provided and the help you have given.

anxiousmark #190159 07-02-2015 05:23 PM
Joined: Sep 2013
Posts: 105
"OCF Canuck"
Senior Member (100+ posts)
Offline
"OCF Canuck"
Senior Member (100+ posts)

Joined: Sep 2013
Posts: 105
So happy to hear from you, know that you are in so many hearts and minds. Thank you for popping in again.
Sophie

anxiousmark #190162 07-03-2015 10:31 AM
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Best wishes, Mark, as you head back home!

Hugs,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
anxiousmark #190324 07-21-2015 12:34 AM
Joined: May 2015
Posts: 9
Member
OP Offline
Member

Joined: May 2015
Posts: 9
Hi all,

it's me again. I'm back in my home country now, but the tonsil thing is not letting me go. I still have the feeling of something stuck in my throat, at the back of my tongue, between tongue and tonsil. I had another look in the mirror and now I finally realize what it is. I have a little white growth on my tonsil. Its not a tonsil stone (I have those, but they come off). This one does not. It looks like a little zyst or something. Since it is at the front, and where the tongue touches the tonsil, I can feel it as this 'something stuck'. I googled again (i know, my bad) and I found someone who had something similar and with whom it turned out to be cancerous (even though he only had to have his tonsil removed, no chemo and no radiation). I wonder know whether I should press for another appointment with an ENT to have this particular thing looked at. Did anyone of you guys have something similar? Or do you guys know about zyst-like growths on tonsils?

wishes,
mark

anxiousmark #190330 07-21-2015 12:45 PM
Joined: Aug 2011
Posts: 596
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2011
Posts: 596
Hi, Mark.

I am glad to hear that you are home now.

Please get a second opinion from a qualified otolaryngologist who specializes in oral, head, and neck cancer.

You've been worried about this for a long time and now you can visualize a cyst-like structure. It's up to you to get it taken care of. Looking on the mirror over and over again isn't going to help.

I'm sorry for the tough love, but it seems like you need it. Here's to hoping it's nothing serious, but the only way you'll know is with a biopsy.

Good luck and please keep us posted.

~Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Page 3 of 4 1 2 3 4

Moderated by  Brian Hill 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5