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#200886 07-17-2021 08:57 PM
Joined: Jul 2021
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Hi, I’m new here. My mom was diagnosed with stage 4 oral cancer just about 2 weeks ago. Everything moved quickly the first week. Oral surgeon (after receiving biopsy results) sent us to specialist in the city about an hour away and we had an appointment in three days time with him. During that appointment he discussed the surgery (which sounds terrifying) removal of jaw, reconstruction of jaw by removing some leg bone to use in place of jaw, neck dissection because one of her lymph nodes (so far) has cancer. He also said she would need radiation and that would cause her teeth to go bad so her teeth would need to be removed as well. He was not sure if it spread anywhere else so he sent us for CT scans with contrast. Went for scans and she was told that they could not use contrast because her creatine level was dangerously high. Doctor said she HAS to have scans with contrast so he said she has to get into nephrologist ASAP!!

My mom at this point who has been a bundle of nerves said she did not want the surgery at all!! She is terrified of the surgery and what may come after (doctor mentioned trach and feeding tube). She said she doesn’t want the pain or possibility she may not be able to speak or eat.

My mom is 75 years old. She is blind, and has hearing aids because she can’t hear very well so losing her ability to speak is almost too much for her to bear. She is diabetic and has hypertension. She also has celiac disease. She said at this point in her life if her kidneys are going bad too why go through such a terrible surgery. My mom (with everything that is already wrong with her) is caregiver for my brother who has the same visual handicap she does, he is also in kidney failure and can barely walk after 3 back operations (currently on a walker and on his way to a wheel chair).

I’m devastated about her decision but I understand it. She will go to the nephrologist (we got her an appointment in a couple of weeks).

The doctor did not discuss any other options other than surgery. I am so lost!!! I don’t have any other siblings to help. It’s just my mom and brother. My two daughters are trying to help me with getting her to appointments because my mom nor brother drive. I work 10 hours a day and my girls work as well so it is getting difficult. My mom is my main priority and I want to help in any way I can but we are kind of in limbo right now. We can’t move forward until she can get these scans with contrast to see if it’s spread. We don’t go back to the doctor until she gets them and all I’m visualizing is this cancer spreading all over the place in the meantime.

Does anyone know if there are options for treatment other than surgery?

Im so sorry this is so long. I hope it even makes sense as I am nothing but a hot mess right now.

Luvmymomma #200889 07-21-2021 08:05 AM
Joined: Oct 2008
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I am so sorry that you and your mom are facing a difficult diagnosis with many complicating factors. I think you absolutely must first have a clear understanding of her kidney function. If she is in late stage kidney failure, this certainly will impact any decision regarding treatment for the cancer.

I highly recommend that you seek out a second opinion from a medical center that uses a team approach (evaluation by medical oncologist, radiation oncologist & surgical oncologist all done in one day) This way all treatment options are considered and presented to you. In addition, these centers treat many oral cancer patients and are highly experienced. There is a list on this site, if you need help finding it, let us know.

The recommended surgery is extensive. The ability to recover from the surgery and quality of life after surgery must certainly be taken into consideration.
Lottie


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
1 member likes this: Luvmymomma
Luvmymomma #200944 08-25-2021 11:04 PM
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Hi there, I have a father in law who survived stage IV oral cancer 14 years ago and he is ok today. So, there is good news.

Definitely get your mom to a nephrologist.

I lost my mom to lung cancer in 2016 after a three year battle. She refused chemo and made the choice that was right for her. I say a little serenity prayed when I need to, and it helps me stay focused. Focused on today and what I CAN do. In hindsight I am filled with gratitude that she gave me time to realize how important each moment is before they were lost. Those moments still keep close to me in times of sadness and I am really ok.

I suggest reaching out to the American Cancer Society to see if they can arrange rides for your mom. Last time I checked they offer a lot of services.

And finally, tell everyone you know about what you are going through. Your neighbor, your employer, friends, extended family, her friends. Facebook and craigslist and nextdoor if you are comfortable. Get in a group chat and let them know what is going on and hopefully they can pitch in. You never know.


Thparkle

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