| | Joined: Jun 2017 Posts: 6 Member | OP  Member
Joined: Jun 2017 Posts: 6 | I was just diagnosed and had a PET scan Fri and a biopsy of another spot on the roof of my mouth. I'll get results this week. It's pink melanoma, not dark. They say is extremely rare so I'm just starting to try to lrarn about it and would like to hear from others who have it. I go to my first cancer doctor this Fri, I'm so anxious to get started doing something about it, but scared and very anxious. Appreciated any thoughts or advice. | | | | | 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 | Welcome to OCF! Yes, your cancer is a very rare one. We have had a few members who have had this over the years. You may or may not find many others with the exact same diagnosis but we can help you with info and support to get you thru the rough times. We do understand what you are going thru, we have been there ourselves and know all too well how difficult it is when you arent sure which way to turn.
Best thing to do right now is eat all your favorite foods. The location of your tumor makes treatments that are focused in your mouth areas so its likely your eating and drinking will be affected, hopefully only for a short time.
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: Feb 2013 Posts: 53 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 53 | Christine,
Do you think this is different from my squamous cell carcinoma which started in my gums but also spread to the roof of my mouth? I know that melanoma begins in the lower cells of the epidermis, but wondered if it might actually be the same diagnosis. I guess she will find out more in her appointment on Friday.
Karen
Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 retromolar trigone resection; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
Surgery 6/19/2018 Right inferior maxillectomy, bilateral low palate resection
| | | | | 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 | Sorry, Karen Im not sure of the answer to your question. I dont think its possible for one type of cancer to change like what you described but I really do not know for sure if it can happen or not. I did a quick search and heres a link from a reputable place explaining it more detail. If you want more info Id suggest asking your doctor about your specifics and if theres any relation. SCC vs Melanoma
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: Feb 2013 Posts: 53 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Feb 2013 Posts: 53 | Thanks Christine. I was actually asking for the benefit of "Auntziplock" as I was going to offer her some of my experiences but didn't want to share info that might now be pertinent to her specific cancer. We do share the same locations, however, and you are right to inform her of the eating and drinking issues that are very real for treatment in those locations.
Karen
Teacher Karen
DX: SCC of right maxillary alveolar ridge, 9/2010.
Surgery 11/2010, removal of 4 teeth and gum.
Surgery 11/2012, removal of 3 teeth and gum.
IMRT 1/2013-2/2013
Surgery 1/2015 retromolar trigone resection; removal of 1 tooth and gum.
Surgery 10/2015 left modified radical neck dissection, inferior parotidectomy, external carotid artery resection.
Cetuximab based chemoradiation 64.8 Gy to resection bed.
Surgery 6/19/2018 Right inferior maxillectomy, bilateral low palate resection
| | | | | Joined: Jun 2017 Posts: 6 Member | | OP Member
Joined: Jun 2017 Posts: 6 | Thank you for the info. I was going through a bad case of nerves last week and couldn't eat cause my stomach was in knots. But got zanax and only need the lowest dose at night to get a good nights sleep. Since then I have been eating good and drinking lots of water. I feel 100% better and my life seems normal again. Hearing all the treatments I'm sure it will be pretty rough but reading these blogs is very encouraging and besides having a large family and friends support group, I feel even more supported here! I'll let you know what plans the docto has for me Friday. | | | | | Joined: Feb 2015 Posts: 134 Likes: 7 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2015 Posts: 134 Likes: 7 | Because you mention the roof of the mouth I was reminded of the book on President Cleveland who, while in office secretly had the cancer in the roof of his mouth operated on while on a friend's yacht over a holiday weekend. It took years for the story to get out and I found it an interesting read. The title is "The President is a sick man" by Matthew Alger.
SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23, all lower gums and teeth removed
TLC356
| | | | | Joined: Jun 2017 Posts: 6 Member | | OP Member
Joined: Jun 2017 Posts: 6 | | | | | | Joined: Jun 2017 Posts: 6 Member | | OP Member
Joined: Jun 2017 Posts: 6 | I received the results of the PET Scan and
it shoed no abnormal findings elsewhere!
That's good news, right?
Last edited by Auntziplock; 06-28-2017 05:04 AM.
| | | | | Joined: Feb 2015 Posts: 134 Likes: 7 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2015 Posts: 134 Likes: 7 | What did the cancer doc say? Its hard to interpret "No abnormal finding elsewhere". Was there anything anywhere? Tom
SCC stage 1 Nov. '03,
SCC stage 2 (clear mrg, no rad, no chemo) RND, Feb. '15
SCC stage 1, lower gum Mar '23, all lower gums and teeth removed
TLC356
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