Previous Thread
Next Thread
Print Thread
Page 1 of 4 1 2 3 4
Joined: Aug 2012
Posts: 20
DeniseM Offline OP
Member
OP Offline
Member

Joined: Aug 2012
Posts: 20
Hi all, thanks to everyone who has posted information here, it has been very helpful. I am having neck dissection on Wednesday (8/29) to remove a recurring tumor along with 20 lymph nodes. I had a partgloss on 9/6/11 which has now spread to the lymph nodes. I wasn't really surprised when it came back but am much more nervous this time around b/c there will be rad/chemo this time. Reading post here has given me some good info, but kinda freaked out too. Reading about the rad "masks" REALLY freaked me out. I had never heard that before. Hate that so many others have had the same or worse but glad to know there is a place to get good information.
Hope everyone has a speedy recovery for whatever you are currently under going and God Bless...with HIS help we will survive!


Female 47 former smoker (quit in 1986), very light drinker. 1st diag 8/1/11. Surgery 9/6/11 SCC L BOT Tongue T1N0MO stage II w/partial gloss with no rad or chemo follow up. Recur 8/16/12 T1N1M0 - stage III. Neck dissection surgery 8/29/12 with 35 sessions of rad and 6 chemo beginning 10/8/12.
Joined: Feb 2012
Posts: 151
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Feb 2012
Posts: 151
Welcome to the forums. Hope you continue to post as I have found them so supportive and informative as you continue this journey. Wishing you a quick recovery from surgery. Ask your doctor about exercise for your arm after surgery. The intern doctor forgot to give my husband the exercises and he really had a sore and drouping shoulder for awhile. Physical therapy helped and it is fine now.


Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
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
Hi there - you and I have had similar cancers - and there are quite a few of us here... ( women - relatively young, non smokers, not heavy drinkers ) - Interesting new demographic - anyway - welcome... Sorry you have to be here but it's a great forum. Most of us here have had rads and chemo and the responses to it have run the gauntlet. Some get through it ok... Some really struggle - most fall into the midline of not great but doable. Hope you are in the top percentile smile

The mask looks horrific - I'm not claustrophobic but when they were making my mask. I admit I was shocked at being locked down to the table. it's for your own good to keep you from moving. After that it was ok... I closed my eyes and zoned out ... If you are claustrophobic there are meds as you probably know. - eat up... Healthy foods if you can... Eating and taste begins to get hard and unpleasant at around week 3 -4. If you have any questions feel free to ask wink and good luck with everything. Hugs!

Last edited by Cheryld; 08-26-2012 06:04 AM.

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
Joined: Jul 2012
Posts: 28
Contributing Member (25+ posts)
Offline
Contributing Member (25+ posts)

Joined: Jul 2012
Posts: 28
I had my mask made this past friday. I too was very scared but I had done my research here on the OCF and took the advice of taking an axiety medication. If you are able to take the medicine I highly recomend it. I took .5 of a xanax and prepared myself to think of being on a fishing trip at my favorite spot.
It was a piece of cake and over in no time. It's a mental thing. Nothing physical to it.

Figure you out a favorite spot to let your mind take you, the beach, a sport, a rememorable vacation ect..... and when they lay you down to start the mask, just go there.

If you are able to take medicine, have a driver and remember to take it about an hour before the precedure to give it time to kick in.

Good luck!!!!! It will be fine.


Age 35, Former smoker/drinker HPV+
Ear Ache 5/12
GP for ear ache 6/18
ENT for ear ache 7/12
CT shows cancer 7/12
Biopsy 8/12
diagnosed SCC
Base of tongue right side
Barely crossed midline
Nodes involved
PEG 9/12
35 IMRT start Sept 6th
Cisplastin x3 1 down 2 to go
Joined: Aug 2012
Posts: 20
DeniseM Offline OP
Member
OP Offline
Member

Joined: Aug 2012
Posts: 20
Thanks everyone for the advise. Will try to keep it together for the rads...after all that's just another piece of the puzzle to recovery. My husband told me to stop reading since I keep busting out into tears when I read another story or outcome or learn something new. But I feel like I need as much info as possible so I know kind of what to expect. Didn't have rad/chemo first time around so this time it is hitting me a little harder. Knew the day I had the bio that it would come back as cancer again...not sure how, just did. I'll stay as calm and positive as I can and will fight like hell to beat this thing and hope that it doesn't come back again. Although from what I have read, seems the odds are pretty that good that it will. Thanks again for all of the advise.


Female 47 former smoker (quit in 1986), very light drinker. 1st diag 8/1/11. Surgery 9/6/11 SCC L BOT Tongue T1N0MO stage II w/partial gloss with no rad or chemo follow up. Recur 8/16/12 T1N1M0 - stage III. Neck dissection surgery 8/29/12 with 35 sessions of rad and 6 chemo beginning 10/8/12.
Joined: Aug 2012
Posts: 20
DeniseM Offline OP
Member
OP Offline
Member

Joined: Aug 2012
Posts: 20
Also wanted to ask....how or when do you/will you know if you will require a PEG? I think that is the other thing that is freaking me out a bit.


Female 47 former smoker (quit in 1986), very light drinker. 1st diag 8/1/11. Surgery 9/6/11 SCC L BOT Tongue T1N0MO stage II w/partial gloss with no rad or chemo follow up. Recur 8/16/12 T1N1M0 - stage III. Neck dissection surgery 8/29/12 with 35 sessions of rad and 6 chemo beginning 10/8/12.
Joined: Dec 2010
Posts: 291
Gold Member (200+ posts)
Offline
Gold Member (200+ posts)

Joined: Dec 2010
Posts: 291
Denise,
I believe that the statistics are if you did not have radiation & chemo the first time, only surgery, you have a better chance of cure with having all three this time. The chemo will boost the radiation effect without giving you more radiation, and I would think for you that it might be recommended. It is true cure statistics don't mean very much to the individual in cancer--it's 100 percent survical or 0 percent, but I think your doctors would tell you what I just said.

Crying is ok--it is a good way to get rid of stress and come to terms with it. I did not cry (my husband did though) until it was time for radiation. Then I couldn't stop for a while. After that I was much better.

PEG--I did not have one, but there is nothing wrong with having it. I ate food, hardly touched the Boost, Ensure, Carnation drinks. I would advise you to consume those drinks in addition to eating if you are not using a PEG. Those drinks are nutritionally balanced, and it is easy to miss some key nutrients if you don't. I was ok, but just sayin' what I should have done. Your doctors should be able to advise you about the PEG. Some people get them & then eat food too as long as possible, and that's ok.

Best,
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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
Some drs insist on a peg mine did, and it didn't matter I couldn't keep the formula down so I cringed and drank my meals near the end and didn't use the peg at all. If you're small a peg might be a good idea particularly if youre sensitive to pain. I don't say this to scare you but for a few weeks near the end you'll likely have mouthsores swallowing and eating will be unpleasant.

And yes this place is scary as hell! What you need to remember is - we all have our own story, just because something happens to one person, doesn't mean it will happen to you. We're all individuals with our own histories, health issues, and positive things going for us. Do educate yourself. Knowledge is power. You'll get through it. 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
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Denise, welcome to OCF. Think of a feeding tube as a tool or piece of useful medical equipment. Some patients prefer to go without one and expect to have it placed if it becomes necessary. Other patients are better prepared and figure they will get one and practice so its there if they need it. Honestly, if you are getting both chemo and rads I would recommend having the feeding tube prior to starting treatments. Its so much easier on the patient to have it in advance than to wait until they are becoming dehydrated and malnourished to put one in. Of course this is a personal choice and a temporary nasal tube could always be used if the patient doesnt struggle until the very end of treatments. It all boils down to your nutrition, the better you do with it and hydration the easier a time you will have of getting thru this.

I know its scary hearing all this. Try to think of it in a clinical way, its all part of what it takes to get you well again. Knowledge is power and should not be feared. You are among friends who have been down this road and will help you get thru it.

Best wishes!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
Denise,

Some of us want to learn everything we can in advance even if it hurts to learn. Perhaps it's our way of easing into the process. Some don't want to know anything. Do what your body tells you.

Re the PEG, we have what we refer to as "The PEG Wars" on this site. The ones that advocate for and against the PEG. I am one against the PEG because I have seen many who end up lifetime dependent because they had it. My RO told me it was up to me and I said NO WAY, a feeding tube is for sick people and I'm not sick! Yeah my stubborness almost killed me but I was talked into a nasal tube in my 2nd week post Tx and I had it for 2 weeks and it REALLY made a positive difference. The nasal tube is fed down thru your nose into your stomach. No surgery and very little discomfort. When you no longer need it, it's just pulled out. I even was allowed to do it myself at home. My point is that it's true that a feeding tube can be a very effective tool in delivering much needed calories, hydration and meds but if I had to do it over again I would wait until I needed it and then go with the nasal tube vs the PEG.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Page 1 of 4 1 2 3 4

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