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My mother was diagnosed with oral cancer (early stage polymorphous low-grade adenocarcinoma) back in April.

Earlier this month, my mom had three teeth extracted and a sizable portion of her palate excised. Her doctors also removed cancer from her nasal cavity as well as a lymph node(s) and surrounding tissues in her neck. She was fitted for an artificial palate, or obturator. When my mom isn't wearing this prosthesis, we can barely understand her speech. Her ability to eat, drink, talk, swallow, and even smile has been greatly affected. It has been so upsetting for me to see her like this.

In the upcoming months she is going to need radiation as her oncologist had a difficult time removing the cancer from her neck and felt he might not have gotten it all.

Everyone in my family is panicking because my mother is hardly eating and not really exercising. (Her doctors recommended a soft mechanical diet and exercise, both of which she has not been up to.)

I seem to be alone in thinking she is doing well considering the fact that she went through a tough surgery and has this awkward prosthesis in her mouth. She also developed an infection in her mouth (thrush) and it was terribly painful, but she is taking antibiotics for that now and is much better. This infection definitely impeded her interest in eating/drinking as she described to us that her "tongue felt like it was on fire." She also has chronic obstructive pulmonary disease (COPD) from years of smoking and this has stalled her desire to exercise beyond walking around the house.

Will breathing, eating, swallowing, and talking will ever be the same? The obturator appears more of an obstruction for her right now. Whenever she tries to eat/drink, food or liquid passes over the top of the obturator and out of her nose or slips out of her mouth as if she is drooling. Her left cheek is numb and she says she can't really taste much of anything. The desire to eat is simply not there, but she has craved liquids. Her throat and mouth are very dry, but she struggles to get liquids down. I have suggested freezing Ensure into ice pops which seemed to help. I have offered to help her in any way that I can and feel helpless when she declines my offers. I try to encourage her to eat/drink and exercise, but I don't want to push her.

I have to believe that in time (and I know it will be a slow process) she will regain more of her appetite (which was never large to begin with) and will exercise more often. My mother's life has been forever altered and I know she is still acclimating.

My mother and I have always been very close but ever since she was diagnosed with oral cancer, I have felt her slowly drift away from me. I feel helpless and awkward around her at times because I don't know what to say or do to help her through this.

Please, if anyone has advice on how I might be of more help to my mom I would greatly appreciate suggestions. Cancer used to be a word until it invaded my mom's life. I never knew how insidious this disease was and I my heart goes out to all whose lives have been touched by it.


Maura
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Wow, you are going through a lot with your mom -- my thoughts are with you and with her!

You say she had surgery earlier this month. It is still very early in her process, so it is understandable that she is not yet exercising and that she is having a hard time approaching food. In my first weeks after surgery, I had to force myself to "eat" -- it was mostly Ensure, Boost, or smoothies that I resorted to in order to make things easier. Since her surgical site is still in flux (has not settled down into its "new normal" state), her obturator probably isn't fitting tightly enough to keep food from going over it and through her nose. I had the same problem for a long time, and just kept tissues at the table with me. It can feel embarrassing, and is a nuisance, but I don't know that it can be avoided at this point for her.

If you are concerned that the obturator is not fitted properly, please go back to your mother's prosthodontist and ask about having it refitted. He can play with the shape of it to some degree and make it fit a little better if that is the problem.

Life WILL become normal again, though a "new normal." Eating, swallowing, and talking will become better as she heals and as she has her obturator properly fitted to her healed mouth. It takes getting used to -- takes many months, for most of us. She is still probably dealing with the after-effects of her surgery -- physical and emotional -- and is understandably not much interested in food at this point. Keep trying soups, smoothies, and if needed Ensure or Boost. She's got to get those calories in, especially if she is headed for radiation in the near future.

I'm sorry to hear that your mom seems distant -- that must be very hard. She has had a trauma to her body and is probably struggling with a lot of really difficult physical and emotional feelings. Maybe distancing herself is her way of dealing with all this; there's not a lot you can do except to stay where you are and be there for her. She still needs you, she just is suffering internally and isn't reaching out, but turning inward. That's okay; I think of it as cocooning, a way of protecting oneself. Stay by her side; she'll emerge when she feels she can.

Can she take little walks for exercise? Can you walk with her, for company? Again, it's early after surgery to be expecting her to exercise much, but getting outside is good for the soul and a short walk can really help.

Please know that there are several of us on here who have dealt with similar surgeries and the obturator, and we're here for any and all questions or reflections or venting or whatever you need to do. Hang in there -- it will get better.


Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
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"OCF Canuck"
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Mightmouse is right... It will get better. It's very early after surgery. I can't speak to the orburator, but the neck neck dissection does cause numbness, and I can understand why after her surgery she is having trouble eating - it will take her a while to recover fro the whole thing - but she should eat - that said make sure she's taking in the high calorie boost / ensure - add in some protein powder if you have to - she needs more protein now for healing and will for the upcoming radiation. A walk even a short one is good, active exercising would be hard this point though it might increase her appetite. I walk my dog twice a day - and even though I really don't have an appetite that makes me hungry.

Sorry about the distance you feel, but your mom is probably still quite traumatized and worried about her upcoming treatments, and everything new going on in her mouth. It will change eventually - just hang in there. You sound like you are doing everything you can - I know it's hard not to nag, but a little nudge or a walk with her would help.

Take care and good luck - radiation is a bigger recovery than surgery - but she'll get through it some how.


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
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Chris and Cheryl,

Thank you for responding to my intro about my mom. It has been tough going through this as a loved one and feeling as if I'm not doing enough or saying the right things. I am very grateful for your feedback.

We are all encouraging her to eat/drink and exercise. Tonight she told me she is doing the best that she can as far as eating/drinking is concerned. She has emphasized too that she is still in the process of getting the hang of her new routine with the obturator and self-care regimen. I will try to motivate her to exercise more and eat better, especially since you both noted that radiation is likely to be a greater hurdle than what she's already experienced as a result of surgery.

On a different note, she has left the obturator out of her mouth for periods of time during the day and while asleep at night and has had difficulty putting it back in. (Any thoughts on this, I wonder?) Her doctors said it would be okay to leave the obturator out and only use it when she talks or eats. It definitely needs to be readjusted and thankfully she has an appointment with her prosthodontist this Wednesday.

Another issue my mom is dealing with is how she sounds when she talks. She hears her voice echoing in her ear when she talks and feels she doesn't sound right. Although her speech is different, I've tried to assure her that I can understand her just fine. Friends and relatives have called the house but she doesn't want to talk to anyone for fear that nobody will be able to understand her on the phone. She is self-conscious about her voice. I'm hoping after a couple of months when her mouth has entirely healed and she has become more accustomed with the prosthesis, that she will feel better about the way she sounds. Wondering if you have any thoughts on this?

Thank you both again for addressing my concerns; your responses were very comforting.

Maura



Maura
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Hi, Maura -

It sounds like your mom is moving along at her own pace with eating, talking, and exercising -- that's all good. It's still early after her surgery, as I said earlier, and will all improve with time.

As for keeping the obturator in vs. leaving it out, I think prosthodontists vary in their opinion about that. My first prosthodontist told me early on to keep the obturator in all the time (including when sleeping), so for my first year I kept it in around the clock (except to clean my mouth, etc.). My second prosthodontist told me to sleep without it, so that's what I do now. It's a relief to take it out at night, and it isn't hard to get in the next morning, but my mouth is totally healed at this point and doesn't really change shape overnight. I imagine your mother's mouth tissue is really in flux and probably means she's going to have a harder time reinserting it if she is leaving it out frequently. Just ask the prosthodontist this Wednesday what the best course of action is.

Like so much of this, the talking is going to take time, too. She will become accustomed to the obturator after a while, her mouth will heal and settle, and speech will probably improve. Also, the readjustments are a must -- I went to the prosthodontist frequently during the first six months for just that reason. Don't hesitate on that; your mom deserves to have an obturator that fits right! It's understandable that she's self-conscious about her speech right now; she's dealing with the trauma of the surgery and with a new mouth and an awkward prosthesis (it feels awkward for a while!). I'd let her take her own time with this; no need to rush.

Good luck Wednesday at the prosthodontist -- take in a list of your questions so you remember everything you wanted to ask.

Maura, it sounds like you are very attentive and dedicated to your mom's recovery; that is wonderful. She is lucky to have a caretaker who cares so much! Hang in there!



Chrissy

Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
Joined: Jul 2009
Posts: 1,406
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Maura, I have no experience with an obturator but I'm heartened reading Chris and Cheryl's posts: things WILL improve for your mother.

The radiation is going to be tough, no question. Especially given your mom's ongoing problems with her lungs, with speech and eating and all the rest. You're going to be vitally important to her during this period and afterward, just as you are now. The doctors may well suggest that she get a PEG tube prior to radiation, something I decided not to do but ended up regretting. (I don't know anything about obturators and how that relates to a PEG of course). So if that's an option I really recommend it.

Please use this forum any time you feel like it. We're all here to help, even if it's just to listen. Your mother is lucky to have you, and even if she seems distant I know that she realizes this. Hang in there. You're a very courageous and loving person.


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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"OCF Canuck"
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Actually yes - a peg wold definitely help her especially if she's having trouble eating - now - it will only get worse with rads and chemo but she should still try to eat/ drink as long as she can.


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
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Chris,

Thank you for strengthening my hope. I have been meaning to get back on this site for several days to thank you and others who have responded to my posts.

My mother met with her prosthodontist and oncologist last week and both said she was doing very well. My belief that she was steadily improving was confirmed by her doctors, so I am glad for that. In the meantime, I am following my mom's lead. My mom, as you suggested, is moving at her own pace and she knows that I am there for her whenever and whatever she needs.

The obturator has been giving her issues ever since her prosthodontist readjusted it. She had a difficult time getting it back in after he refitted it and there have been a couple of days this past week that she has really struggled to get it in. She has a tremendous gag reflex that kicks in when she tries to put it in. There were a few mornings that she just couldn't get it in and couldn't eat/drink anything as a result. I felt terrible for her. After much encouragement she was able to get it in later in the day.

The past couple of days she has left the obturator in at night for fear that she will be unable to get it back in. I was concerned today when she told me that she hasn't even taken it out to clean it because she is afraid she wont get it back in. She already has had one mouth infection (her docs attributed it to some of the meds she was taking which made her susceptible to infection) and I'm worried that she could be putting herself at risk for another if the obturator and her oral cavity are not properly cleaned. Her next appointment with the prosthodontist is this Friday, so I am hoping matters will improve with her obturator.

I know from reading some posts on this site that other people have had difficulty inserting their obturators after leaving them out overnight or for any length of time -- at least during the early weeks while the oral cavity was still healing. I'm wondering if anyone has any tips on how my mom might get past this gag reflex or if there are any techniques to inserting the obturator?? Her prosthodontist offered her some type of numbing gel or spray for her mouth to decrease sensation and make it easier for her to insert the obturator, but this hasn't seemed to work.

My mom will also be starting radiation soon. She has her first consultation this Monday. She will have radiation to the nasal area and neck. At this point I am speechless, so I will sign off now.


Maura
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David,

Thank you for responding to my post. My mom's doctors haven't suggested a PEG tube, in as far as I know, but I can understand how it might be an option if she experiences greater difficulty eating/swallowing as a result of radiation.

Thankfully, during the past week she has begun to eat and drink more. In the 3 weeks my mom has been home from the hospital she has improved tremendously. My mom is keeping positive and is very strong, so I think that has helped her (and us) a lot.

Thank you again for your input and support.


Maura

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