| | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | OP  Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I saw my Oncologist this ,morning. He commented on how terrible the side affects in my mouth are and left it up to me about remov9ng my lower jaw. Then he noticed the spot on the crown of my head on the left side. He had checked it a few years ago but had forgotten about it. He made an appointment for me with a Plastic Surgeon to see about removing it.
Then I went for blood work to check my PSA. This was for the Dr that is the head of the Cancer Unit at the Hospital. I got back home at 11:45 and the phone rang at 2:50. It was the Boss mans Nurse calling to give me the results of the PSA test. It is perfect. These Drs all are very prompt and I hardly ever have to wait for any test results. I wish you all get this promptness with your tests too.
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: 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 | You are very fortunate to have such good people working on your team. Very fast results!
So whats he latest about the stomach situation and then fixing the jaw? What did your oncologist think? He must have told you something or at least he really should have.
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: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | He told me the way my mouth looks that it has to hurt bad, But he said he wants me to make that decision because there are no guarantees.
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: 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 | Jim, you know I love ya!!!! You are one of my pals on here and we both are always rooting for each other.
I know you have been in alot of pain for way too long. The mandibulectomy is not an easy surgery. I had complications that most people do not. It was really hard for me to recover from that kind of surgery.
Your doc is right.... think long and hard about this whole thing. Its ultimately your decision on what to do about your sore mouth. I wish I had a magic wand that would take away your pain and leave a nice set of shiny new teeth in its place. If you have any questions that I can answer for you let me know. Dont forget you can always go for a second opinion on 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: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 | Whatever you decide... i hope it all goes in your favor... you more that deserve it... take care.
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: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Love you Jim, you're on my heart my friend.
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: Jan 2011 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Jan 2011 Posts: 63 | All the very best with whatever decision you make Jim..God bless xx
SCC of the Buccal Mucosa (R cheek)- T1N0M0.10 hour Surgery on 27/9/10 involving resection with freeflap from radial forearm..clear margins. Neck dissection..negative nodes.Trachy, NGT, no rad or chemo needed at the time. Neck lump positive for SCC..again! MND 14/2/11. Waiting to have chemo and rads
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | All I can say is thank you all. I think this on my head bothers me more than the pain. I believe the head problem started about the same time the OC did and have a feeling they are connected.
Christine, Yes we have been close and loved each other for years. You are my guiding star it seems and lite my way. I hope I am as brave as you are. It seems I have the jaw on my mid 24 hrs a day trying to figure out.. " Do I or Don't I ."
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jun 2009 Posts: 875 | Hi Pal:
All I can say is I want to know what you decide, so there! Also, didn't you say that spot on your crown hasn't changed that much since first noticed? It looks like if it were anything bad, it would have gotten bad by now, so we're just not going to worry that much about it, so there, again LOL. The jaw issue is the biggie, along with re-doing your stomach, which are both surgeries I know you dread. In reading about others who have had the jaw surgery, some have no trouble, some have a little trouble, and others have a lot. So, Big Boy, it's up to you, like you said. I believe your tough enough to handle anything though if that counts for anything.
(((((((((((((((((((((((((((JIM))))))))))))))))))))))))))))))
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | | Joined: Jul 2006 Posts: 446 "OCF Canuck" Platinum Member (300+ posts) | | "OCF Canuck" Platinum Member (300+ posts)
Joined: Jul 2006 Posts: 446 | Jim,
You'll think it through, in detail. and exmanine the positives and negatives and come to a decision, commit to it and move ahead. Just like when you first came to this board, seeking advice.
That was more than 2000 posts ago for you...I clearly remember the first ones you made. You were afraid, confused unsure of what to do, if anything....BUT...you thought things through, ate the elephant one bite at at time, and move forward, always forward.
You'll make the right choice, the same way, this time too. Much luck, my friend
SCC left mandible TIVN0M0 40% of jaw removed, rebuilt using fibula, titanium and tissue from forearm.June 06. 30 IMRT Aug.-Oct. 06
| | | | | Joined: Aug 2007 Posts: 1,301 "OCF Down Under" Patient Advocate (1000+ posts) | | "OCF Down Under" Patient Advocate (1000+ posts)
Joined: Aug 2007 Posts: 1,301 | I have never liked hearing that the patient had to make a choice about treatment.
I have experienced it for myself and parents with their issues. My immediate reaction is to say that you are the professional and this is your field of expertise...not mine!
Guess I have come to realise that in some circumstances it is not always black or white for the professionals.
Sadly I think you will have to decide the do you or don�t you. As Wayne says you have to weight up the positive and negatives.
You have so many people that love you here and we are all willing you to make the right choice.
Much love and hugs {{{{{Jim}}}}}
Gabriele xxx
History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.
1/31/16 passed away peacefully surrounded by family
| | | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: May 2008 Posts: 357 | Jim,
Hard choice, I know. But I hope you also know that whatever you choose, we will support it 100%. You're a good man and you have always looked out for yourself, so whatever you chose will be the best for you.
I'll say a special prayer for you tonight.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | OP Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I am still in the thinking about it stage. Ther are so many things that are a possibilty. One of the main ones is. Will this let the Barretts turn into Esophageal Cancer and if so, is it worth it. To this I would say forget it and go on as is. What will I be able to do for myself as I want to have a garden, keep my yard mowed, painting to do inside? I know this sounds trivial but to me I want a life not just to exist. Since day 1 about 4 years ago, I have done all of those things and much more. If it's possible for me to dig, mow, clean house, shine my car and really just about everything that needa attention, then I will go for it. I just can't sit but must be busy and usefull. It is in my system to be this way. I bet there are a lot of us that say it can wait but in a few minutes are taking charge and hard at it. Just airing it out and thanks for listening. Old Gotta do it. LOL
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
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