| | Joined: Aug 2009 Posts: 2 Member | OP  Member
Joined: Aug 2009 Posts: 2 | My dad just told me that he has Scc stage 4a...i dont even know what that means really other than he has cancer. He is terrified that his quality of life in the now is not worth what he could gain in the furture...he is 60 and watched, cared for and lost both of his parents to different cancers. i need help..information mostly on what is to be expected during treatment, after and so on... or tell me what other info i need to get from him/his drs to help me in my quest for info...thank you so very much in advance. maggie
| | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Hi maggie
welcome to OCF.The first thing you need to do is go to the forum list and click on Brian Hill's post "New Users" about the site and how to use it.Until you have more information about your Dads condition and his projected treatment plan it is difficult to give you advice or help on what to expect as each treatment option brings its own particular problems.When you have read the post from Brian, perhaps you can get some more information about exactly where your Dads cancer is ,who he is seeing and what they suggest as treatment
Last edited by Cookey; 08-21-2009 11:21 PM.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Aug 2009 Posts: 207 "OCF Down Under" Gold Member (200+ posts) | | "OCF Down Under" Gold Member (200+ posts)
Joined: Aug 2009 Posts: 207 | Hi Maggie,sorry to hear about your dad. Agreeing with Liz, try also & read as many blogs on this site as possible, this site is a blessing, the only other sites I would visit would be cancer clinic research centres...everyone here is here for you, never forget that...xx
Jeanna
Jeanna
Wife/Carer of Rod, 56, Dx 5/3/09, SCC Oropharnyx T4 N2, End Tx 28th 07/09, 7wks Rad, 3 Cisplatin, primary tonsil, 4cm Lymph right of neck, 1cm left, in jaw & soft palate & base of tongue. Peg 06/09. CT & PET scans 02/11 - NED. Dentures 20/09/11, PEG out 28/10/11.
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | the most important thing to do in my opinion is to be sure that you go with your father to ALL of his doctor appointments from now on. That way you will hear what the doctors actually say as well as be able to ask questions yourself, Plus a very common phenomenon is that male patients will answer "okay" or "fine" instead of telling the doctor of symptoms like getting up thru the night or choking on mucous, pain, etc etc
Yes, educate yourself on this forum by reading the posts and asking questions but too many caregivers (not the ones here though) rely upon hearsay of the patient. Plus it really helps the patient to have another set of ears to take notes and not have to repeat everything when he gets home,
Finally, I was 60 when I was first diagnosed and also had Stage IV cancer - you can see from my signature below how much radiation and surgery I have had and YES my quality of life is very much diminished from before, so I really do understand your father's fears. Perhaps all too well, because if I almost threw in the towel when the cancer came back because I did not want to live without being able to eat or speak (which did NOT happen the first time around so please do NOT panic). But it turns out Life is still worth living even without those basic pleasures. sorry you had to join us,
charm
65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin
Passed away 4-29-13
| | | | | 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 | Magylee
Welcome to OCF. Im so glad you have found OCF to help you with your concerns. Quality of life is a big concern for oral cancer patients. Your father needs to get full info to be able to make educated decisions. At age 60, he still is young enough to be able to go on and lead a good life. It will be different then how he is now, but it can be a decent life.
Sure the treatments are hard. They can be accomplished. His fears are probably based on alot of what he went thru with his parents. A big saying around here is ... everyone is different. This is also true about other types of cancers. The after effects of OC are sometimes harder to overcome than other cancers. This does not mean it cant be done and go on the live a great life.
Seek out posts by wfc. He went thru this relatively easy. Read and educate yourself so that you can help your father. The main pages of OCF are full of up to date news and info. There are a couple of very important posts on the forum to read.
First...under New Posters tab... New Here? Read this first!
Second... the last tab... Getting thru it project... Draft Copy
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: Aug 2009 Posts: 2 Member | | OP Member
Joined: Aug 2009 Posts: 2 | Thank you all!!!! i have been on this site for most for most of the night reading and learning from all of you. I have a list of questions for him to ask his doctor and a better understanding of this world now. so thank you again for the help, support and the knowledge! For the first time in two weeks I feel like there is hope and you all helped me see it!!! so from the bottom of my heart THANK YOU!
| | | | | 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 | Magylee
This is the right place to be for help. You and your father will get the support you both need to get thru this and get back to a regular life again. Please ask questions here, it will help you know what to expect when you go to doctor appointments. The members of OCF have hearts of gold and will help you along the way.
When you have time please add a signature line. Its under the My Stuff tab, I think its preferences, maybe profile. It will help us get to know you, your father and its easier to answer your questions.
You made my day when you wrote that now you feel there is some hope. Thats why survivors reach out to anyone struggling. Everybody needs a helping hand to get thru this.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Maggie,
I was 58 when Dx'ed with Stage IV SCC and I'm 3 years post Tx and cancer free (see my stuff below) so tell him to call me if he would like to talk (you to) at 727-322-5669 office day or 727-434-0074 cell anytime. This one one of the most potentailly beneficial times to get advice.
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | Maggie, I am older than your Dad and David by a few years. He is still a kid because life begins at 65. I will be 74 in Feb and am hoping to collect a steak dinner from Christine or buy her one before 2010 is over.2009 isn't great year yet, but 2010 will be never again. Welcome to our home where the door is never closed. I will have you and your dad in my prayers.
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: Dec 2008 Posts: 1,004 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Dec 2008 Posts: 1,004 | Hi Maggie,
Welcome to OCF. You have found the best site out there. Everyone here is welcoming and helpful. The beginning is the scariest part. I agree with Charm....you, or someone else needs to go to his appointments with him. You always need more than the patient there. We get nervous and don't hear everything and don't remember what questions to ask. (At least I never do) You are already being an awesome caregiver by taking the time to read through the site and make a list of questions.
Good luck to you and your dad and I look forward to hearing how your dad is doing.
Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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