| Joined: Jan 2010 Posts: 15 Member | OP Member Joined: Jan 2010 Posts: 15 | Hi. I am 47 yrs old and I was diagnosed with SCC on 12/15/09 after having a lump removed from the right side of my neck on 12/10/09. PET scan showed occult primary. Subsequent surgery on 12/29 revealed primary in right tonsil - tonsils were removed. I am now healing from the tonsilectomy and scheduled for PEG surgery 1/29/10. I have a dental exam on Monday and if I get the all-clear, will probably start treatment early February.
I have read many blogs, performed hundreds of google searches, and have an idea of what to expect, although I realize experiences are different for each cancer patient. I am very scared, dazed and feel like I'm waiting for 'the other shoe to drop.' However, as a recovering alcholic, sober 17 years, I am prepared to do whatever is necessary to battle this thing! My husband of 25 years and my parents and close friends are rallying to my support so, despite the cancer, I still feel as though I am very blessed. Any advice on concurrent cisplatin/radiation is most welcome. As I stated earlier, as a recovering alcholic and member of AA, I know how powerful communication from those who traveled the same road is. Thanks for any help, advice, or encouragement you can provide. I am going to need you all so much in the coming months!
SCC Right Tonsil (Stage 4 T1N2bM0). Surgery to remove lump in neck on 12/10/09; SCC dx'd 12/15/09; surgery to remove tonsils and biopsy done on 12/29/09. Right tonsil found to be primary; PEG surgery 1/29/10. Will begin TX-35 rads and 3 chemo (cisplatin) on 2/8/10.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Chris..
Welcome to OCF. You have really provided yourself a great place of comfort and information here.
My biggest advise is to continue to read and glean all the information available here, both on these forums and thru the main website pages.
Also make sure to have your hubby onboard with the information that he needs to be a good caregiver. You will probably reach a point during treatment that will require him to track all of your care...you will most likely not feel like or be able to control your nutrition, hydration (hugely important,)pain meds, all of the information coming from you physicians, etc.
Again, welcome aboard this not so wonderful train and good luck in the coming weeks.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Sep 2009 Posts: 618 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2009 Posts: 618 | Chris,
FYI U Penn is one of the best facilities in the country for oral cancer treatment. I got my second opinion from them and I'm in Michigan. If you have a chance check in with them.
Also. Eat Eat Eat. you are going to be facing radiation treatment and it will be hard eating later. Take this chance to get as much additional weight on you as possible.
Kelly
Kelly Male 48, SCC (Soft Palet) Rt., Stage 1, T3n0m0, Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09 04-20-10 NED 8-11 recurrence, node rt. neck N2b 10-11 33 IMRT w/chemo wkly 3-12-12 PET - residual cancer 4-12 5 treatments with Cyberknife & Erbitux 6-19-12 Pet scan CLEAR 12-3-12 PET - CLEAR
| | | | Joined: Jan 2010 Posts: 15 Member | OP Member Joined: Jan 2010 Posts: 15 | Thanks, Kelly and Deb, for your replies. I am still recovering from the tonsilectomy/biopsy but am trying to eat as much as possible! I'm 5'6" and weight 130 lbs, so I know weight management is going to be an issue with me since I can't afford to loose too much weight.
Hubby is on board as are both my parents; my Mom and Dad are both retired and live only 11 miles from my house, so while hubby is at work, they should be able to care for me when I get to that point. They have come to all of my appointments so far, I hate putting them through this, but they want to help and I know I am going to need them BIG TIME. I guess you never outgrow needing your Mommy, eh?! Thanks again, I'll let you know how I'm doing.
Chris
SCC Right Tonsil (Stage 4 T1N2bM0). Surgery to remove lump in neck on 12/10/09; SCC dx'd 12/15/09; surgery to remove tonsils and biopsy done on 12/29/09. Right tonsil found to be primary; PEG surgery 1/29/10. Will begin TX-35 rads and 3 chemo (cisplatin) on 2/8/10.
| | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,219 | Chris,
Where are you being treated? I treated at Fox Chase Cancer Center in Philly. Where do you live in PA.?
Good luck with your treatment.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Hi Chris Welcome to OCF. You will find lots of support here. We will help you thru this battle. It can be difficult at times but it is something that can be done.
Right now, try your best to focus on the present. Enjoy the time you have before all the treatments start. Eat like crazy. At your size, you really should try to gain a few pounds. Im the same size so know you arent very big. I lost a total of 70 pounds over 3 years and 3 OC battles. Try not to spend your days worrying about what will come in the future.
If you dont mind, where in PA are you? Im in the Allentown area. There are several OC survivors who live in PA and Im lucky enough to have met several wonderful people from the forum. There are 2 who are local and we all even have the same doctors.
If you have questions, please feel free to ask. Best of luck with everything. ChristineSCC 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 | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Chris,
Let me commend you on your attitude and outlook, keep a hold of that as you move forward. Fear of the unknown is natural, know that those of us that have traveled this road are here to support and as guides, use us as you need.
I really can't add to any of the wonderful advice given above except to reinforce the eating and Debs point of getting your husband up to speed on his caregiving role. Make no mistake that that role is not only vital, but harder then hell. Encourage him to get on this site as well and be informed and talk with other caregivers...he'll need support too.
Go Get Em
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | [quote=chris monkhouse]Hubby is on board as are both my parents; my Mom and Dad are both retired and live only 11 miles from my house, so while hubby is at work, they should be able to care for me when I get to that point. They have come to all of my appointments so far, I hate putting them through this, but they want to help and I know I am going to need them BIG TIME. I guess you never outgrow needing your Mommy, eh?! Thanks again, I'll let you know how I'm doing.[/quote] Chris, To have your parents close by is a godsend especially if your hubby has work requirements, etc. Yes, you will need your Mom and I am so happy that she (and your Dad) are there. There is nothing like a Mom's touch when you are sick. It sounds as though you have done a lot of reading and research and best of all YOU PUT YOUR SIGNATURE IN YOUR POST WITHOUT ANY OF US ASKING YOU TO (a usual newbie thing)! By reading, you will see that most of us (you will note that even as a caregiver I use the royal we) started with the more challenging symptoms of treatment around week three. Until then...get proper rest and nutrition and things in order that, when you feel lousy, won't get done. Again, good luck..some of your anxiety will leave once you start treatment because you will feel like you are "slaying the beast."
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Chris, I agree with Eric and the rest, Attutude is a big part of thie battle and you seem to have it. Welcome to our home and visit us often and fill us in on what goes. Listen to Christine about eating and eric too. Between the 3 of us we have lost about 210 lbs. Ilost 70 in about 7 months and still am a pee wee. LOL Eat anything anf every thing. And drink plenty of water.
Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April. --- Passed away 5/14/14, will be greatly missed by everyone here
| | | | Joined: Jan 2010 Posts: 15 Member | OP Member Joined: Jan 2010 Posts: 15 | Jerry & Christine - Thanks! I live in Hanover PA (it's between York & Gettysburg). I LOVE Philly ! I went to 2 yrs of High School there (dad was in the military - stationed at the Navy yard at the end of Broad St). Even though I lived in Baltimore after HS for 25 yrs before moving to Hanover, I still visit Philly often - always go to 4th & South for a cheese steak at Jim's (not a fan of Pat's or Genos!)
EZJim, Eric & Deb - thanks for the support. I'm trying to eat as much as I can but throat is still very tender from surgery 3 weeks ago. So - I started drinking 3 cans of EnsurePlus along with eating what I can. I had absolutely no objections with my RO's suggestion of having the PEG surgery before treatments start, since I can imagine how critical maintaining my weight/nutrition/hydration will be for my body to heal from the treatments. Hey, maybe I should make a 'cheese steak run' to Philly pre-treatment to fatten me up?!
Thanks again to all of you guys. I am so grateful I found this site and wonderful forum - I am going to rely heavily on you all! I'll let you know how my meetings go after the Dentist appointment on Monday. I think I will feel better when I have a more concrete timeline for the beginning of the treatments.
Chris
SCC Right Tonsil (Stage 4 T1N2bM0). Surgery to remove lump in neck on 12/10/09; SCC dx'd 12/15/09; surgery to remove tonsils and biopsy done on 12/29/09. Right tonsil found to be primary; PEG surgery 1/29/10. Will begin TX-35 rads and 3 chemo (cisplatin) on 2/8/10.
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