| Joined: Sep 2015 Posts: 3 Member | OP Member Joined: Sep 2015 Posts: 3 | My Mom, Linda B, was diagnosed with mouth cancer a few years ago. She had surgery to remove a small part of her tongue, inside cheek, and other interior tissues. Unfortunately she has mouth cancer again. This time the surgery is going to be a lot more intensive and may require a skin graft from under her arm and bone taken from her leg to replace loss of bone and tissue in her mouth.
I am hoping that by me making this post, my mom will feel more comfortable posting her own feelings about what is going on. So far she has signed up to the forum and read some of the entries here but hasn't known where to start with her story.
I think one of the biggest worries for her is how she will eat (and what she will eat) post surgery. | | | | Joined: Nov 2009 Posts: 644 Likes: 1 "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) | "OCF Down Under, Kiwi" "Above & Beyond" Member (500+ posts) Joined: Nov 2009 Posts: 644 Likes: 1 | Hello Kathi. Your mother can start anywhere. I think it would be good for her to tell her story here. How her oral cancer started. Her current diagnosis and any questions she has.
What she can eat will depend on the type of surgery. I've had two lots of large scale surgery but can eat soft foods. It's a nuisance socially but I've managed to get around it. I eat soup and have smoothies, milkshakes and coffee when I go out. Lots of people can eat a much more varied diet than me. I'm stymied by missing teeth and as well as post-surgical problems. The main thing is getting rid of the cancer then getting help from a speech language therapist and a dietitian for help with eating.
Best wishes.
1996, ovarian cancer surgery + cisplatin and taxol. September, 2007, SCC of left lateral tongue. Excision. October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT. February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
| | | | 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, Kathi (and mom Linda)! Thank you for joining OCF and helping to encourage your mother to join in. We understand what she's going thru. Ive had a similar surgery myself and know how hard it is to manage this mentally. Hopefully your mom will post soon so we can get to know her and give her info and support 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: 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 | HI and welcome. Its unfortunate she's had a recurrence (not unusual - unfortunately) the surgery may be extensive but as long as it's been done at a top CCC she should come out of it okay. The surgeon and plastics guy makes a big difference. I had 1/3 - 1/2 of my tongue removed and rebuilt and a bunch of nodes removed. You can only tell this by a small lisp when I am tired (or strangely enough when it is super cold out)
I can eat and drink fine. I have some numbness and stiffness in my neck and that's about it.
I am insanely blessed but I also thank god I had the surgeon and plastics guy I did.
I also had radiation which should be on your mom's plate too - with this being her second go round.
Hugs and blessings.
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: Sep 2015 Posts: 3 Member | OP Member Joined: Sep 2015 Posts: 3 | Thank you for the replies. Mom's surgery is this coming Tuesday at the UofM hospital in Ann Arbor. I would like to get her a few things to make her 10 day hospital stay as pleasant as possible, any suggestions? Also, I would like to buy a small, one serving, blender like a "Magic Bullet" to be able to puree foods during her recovery. Most of the blenders say they are for smoothies & shakes and I don't know if it will be powerful enough to puree "real food"? If there is a thread here regarding this, I can't find it so if there is please link me Following the surgery she will begin chemo and radiation and I think she is more fearful of that then the surgery itself. I wish I could do more to help. | | | | Joined: Jan 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Hi Kathi,
Welcome to OCF. Sorry to hear your mother has oral cancer again.
Eating and speaking will be difficult after surgery, so a white board or tablet to write notes would be helpful. Also, a cell phone she can use to text or email.
I don't know if a Magic Bullet will be powerful enough to puree real food. A Vitamix blender is probably the best for that, but they are expensive. If she is getting radiation therapy (RT), she will probably use it during and after RT.
Can you add a "signature" to your profile? The signature contains information about your mother's diagnosis and treatment and appears on each post you make. By doing this, it is easier for other forum members to reply to your questions.
Wishing your mother the best!
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
| | | | Joined: Sep 2015 Posts: 3 Member | OP Member Joined: Sep 2015 Posts: 3 | Someone else asked me to make a signature with her specifics but I don't really know them. Mom is the kind of person who doesn't let on when she is hurting. I had to go see the surgeon to get some answers about what the surgery would entail but for the other stuff I am still in the dark. I really hoped she would post here but it looks like she hasn't.
I will check out the vitamix, thank you for the suggestion. | | | | 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 | Kathi, Im sure you know your mother better than you think. Try to think of a brief timeline of what she has been thru. A signature is a huge help which helps us to give better advice. All you need to write is some of your mothers history. I will resend you the info on how to do the signature. Click on the tiny flashing envelope next to the My Stuff tab.
If you are going to check out the vitamix blender, OCF offers this blender at the same discount you can get with someone else. Its truly the top of the line, no other blender comes even close to what the vitamix blender can do. Plus their company fully stands behind every single blender they sell. Click on the small vitamix picture towards the top right of this page for more info.
Thank you! 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 2006 Posts: 756 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2006 Posts: 756 Likes: 1 | Kathi,
Regarding the signature - don't worry if you don't have all the "correct" information - you can always update the information at a later date. What I didn't realize from first post you made today is that your mother had oral cancer a few years ago and was treated with surgery only. So start with that listing year, cancer location, and that it was surgery only. Then list info about current diagnosis and recommended treatment. See my signature and the others that have responded to your post.
Also, since the patient is your mother, perhaps have a line to the effect "Kathi, daughter of Linda (patient, age xx)".
Regarding food post-treatment - that all depends on the individual and what treatment they had. Some patients used a feeding tube, and others were able to "eat" by mouth, but what they were able to eat was limited. There are many posts on the forum discussing this. I found it is hard to plan ahead, so take it a day at a time.
And there is no dumb question, so don't be afraid to ask. We are here to help you and your mother get through this.
Susan
SCC R-Lateral tongue, T1N0M0 Age 47 at Dx, non-smoker, casual drinker, HPV- Surgery: June 2005 RT: Feb-Apr 2006 HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105! Recurrence/Surgeries: Jan & Apr 2010 Biopsy 2/2011: Moderate dysplasia Surgery 4/2011: Mild dysplasia Dental issues: 2013-2022 (ORN)
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