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Joined: Aug 2017
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Joined: Aug 2017
Posts: 1
Good evening! I am so happy to have found this forum. I am the 41 yro daughter of a 66 yro. Both my parents were diagnosed with cancer on May 20 2017. My dad's prostate cancer surgery went well on July 13 and he is recovering quickly. My mom's cancer surgery was on July 24 and she is now home with hospice care.

She has stage 4 buccal mucosa squamous cell carcinoma. During her surgery, they removed an area the size of the palm of my hand (3 in diameter) and her lower left jaw (mandibularectomy) from her front canine tooth to the condyle process in the back. They did not rebuild the jaw. They did a neck resection and that has healed nicely as well as her tracheotomy site. She had a skin & tissue graft from her left arm to rebuild the tissue in her mouth.
They recommended 35 treatments of radiation as it is in her bone. She declined when we soon found out the cancer has also spread to her trigeminal nerve (perineural invasion). She chose to go home with hospice and decline any further treatment. (When she went in for surgery, the doctors thought it was only stage 2. It had grown that fast since her CT scan on June 23.)

She is desperate for information about what to expect. The doctors have given her 6 months at best, but all they tell us is "every case is different" and that at the end she "willnot be able to eat or swallow and willneed to use her peg tube for pain meds."
Has anyone else experienced or had a family member experience the cancer spreading to the nerves?

We have been told that it will move backwards (retrograde) towards the brain stem.

Prayers to you all, and thank you in advance for any information you can share.

Joined: Jun 2007
Posts: 10,507
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Daisy! I am so very sorry to read of your parents both being diagnosed with cancer. It just breaks my heart reading your post. Ive never heard of any couple who both were told the terrible news on the same day. This must have been so difficult for everyone involved. I cant imagine how you and your parents dealt with it that day, and afterwards.

Your mothers case sounds like a very complex one. Sadly, we do have many caregivers whose patients have passed away from OC. Many still check in on our forum from time to time, but they dont always post. I dont know if any of them went thru a similar diagnosis as your mother. Even if the patient was given the same exact diagnosis, their experiences could be vastly different. The doc is correct in saying "every case is different", we see this all the time around here. There are a few posts that go into great detail about what the deceased person went thru towards the end. This may be helpful in what your mother is looking for. Looking thru the "Left behind" section or using our search function may get you to those posts. I also suggest asking the hospice staff, they should be a valuable source for this type of info.

Best wishes to you and your family.


Christine
SCC 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 smile
Joined: Jun 2015
Posts: 29
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Jun 2015
Posts: 29
Oh, Daisy! I'm so sorry you're going through this with two parents! I agree with Christine that everybody's situation is different and the hospice people are excellent resources. My mom passed away in November 2015, after being diagnosed with squamous cell carcinoma of the tongue in December 2014. They thought that she was a Stage 2 (clinically), but after her hemiglossectomy, they realized that her margins were not clear, the cancer had particularly devastating features, and that she had perineural invasion, too. She was in a great deal of pain even prior to her radiation and chemo, but after treatment, she suffered from trigeminal neuralgia, which was painful and made it difficult to sleep. She had what we thought of as 2 more recurrences, and one more hemiglossectomy, although her cancer never truly went away. In the end, when we realized it was growing back again, she was on hospice for less than a week before she passed away. The last time, the cancer was in her nasopharynx, moving back and down, and also close to her larynx and in her nodes, too. She had already been dependent on the feeding tube. I don't want to go into a lot of detail only because we don't know what your mom will experience; but my mom had an episode the morning she was supposed to start hospice, and I had to suction her so that she could breathe, and she was never conscious again. She was on a great deal of fentanyl (patch) and morphine sulfate. But know that the hospice people will walk you through this, and you should not be afraid to call and ask them questions even in the middle of the night. They'll provide pain relief-that, I think, is a big goal for them. Also, one thing I replay all the time-in the middle of the night the night before she grew unconscious and died, I was sleeping next to my mom to give my dad a break, and she got up to look in the closet-I thought she was trying to get to the restroom. So I was insistent that she let me help her get there. She was not steady on her feet, and she had some involuntary jerking either from the meds or from the tumor growth, so it was really hard to redirect her, and she had already fallen in the middle of the night before trying to get to the restroom, which is why I was sleeping with her. I remember being insistent that she let me help her to the restroom, and then helped her to the restroom and back to bed-I told her I'm sorry for being pushy, I loved her, and I just want her to be safe, we hugged and we both went to sleep. As I look back on this and after reading about what the dying experience, I now believe that my mom was trying to "pack" for her "journey." She died just two days later. I say this just to tell you that when people are on hospice, there are things that happen that we just don't understand. There may be powerful experiences that you'll never forget. There is no more important time to be with her if you can. Tell her you'll help her pack. I'm happy to answer any questions you may have.


Mom (beautiful soul) 12/4/14 SCC L tongue (neg. biopsy 10/14);
1/8/15 hemiglossectomy/neck dissection: T3N1, extracapsular extnsn, PNI, pseudoglandular/spindle cell, margins not clr;
2/2/15 RT/carbo/taxol;
4/15/15 CT clr;
5/15 neuropathic/trigeminal pain/headaches;
6/15 recurrence flap margins/BOT; cancer encroaching skin
7/23/15 hemiglossectomy; clr margins & nodes
10/22/15 CT: nasopharyngeal tumor, jaw, and necrotic nodes; tumor under chin/corner of mouth
11/5/15 left cancer behind





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