#38149 01-29-2005 12:17 AM | Joined: Jul 2004 Posts: 7 Member | OP Member Joined: Jul 2004 Posts: 7 | Hello all,
I have not been on the forum in awhile but just had some questions. My Father is currently in the hospital and doctors have pretty much given us the survival time to be 3 weeks.
In Summary my father was first diagnosed with oral cancer in 8/03 with squamous cell carcinoma in the left cheek. At that time he was diagnosed with stage II. He had a radical neck dissection with and 30 Rad. Reoccurrence in his throat in 7/04 treated with cisplatin, Iressa and 30 Rad. Area that was treated came out clear in 11/04 but cancer had spread to the right side of his mouth. Throat swelled up and trach was placed in. He was in ICU for 2 weeks. Scans in 12/04 showed that the cancer had now spread to the skin of is chest, a lymph node in the lungs and the base of the skull. At this point the docs had estimated a month or so.
The doctors said it was not | | |
#38150 01-29-2005 12:25 PM | Joined: Aug 2003 Posts: 1,627 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Aug 2003 Posts: 1,627 | Hi Swati, I'm so sorry to hear about your father. It must be quite a load for him to handle to be told the cancer has returned again. Not to mention the effect it must have on you as a caregiver. I don't hae the knowledge needed to answer your question but I wanted to wish you well and get your post back to the top. Minnie
SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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#38151 01-29-2005 01:00 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Swati, I am so sorry to hear your latest news. It is the time to consult with the local hospice people to find out what options you have to make your father as comfortable as possible. They do an exceptionally good job at pain management.
If you can find a window of opportunity to find out his wishes you should. Did he fill out advanced directives?
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#38152 01-29-2005 01:45 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Swati: I do not know your families religious beliefs, but as for me I believe that God has a plan for all of us and if it is in God's plan to call your father home let it be without suffering. You and your family are in my prayers, God Bless You. Darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#38153 01-29-2005 02:07 PM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2004 Posts: 372 | Swati, It must be so hard to know which way to go at this point. I know what we have been thru and I am not sure how much more Dan was do as far as invasive surgerys and treatments if there was no sure answer. Know that you and your family are in my prayers and I agree with Darrell that God definitely has a plan for us all. It doesn't mean that I don't get very scared and sad, but He always helps me during the darkest times. Take care and God bless, Debbie
Debbie - Caregiver for husband, Dan, diagnosed with tongue cancer 7/03. Partial gloss., mod. neck dissections, graft. Recurrence neck tumor 12/03. Radical left neck dissection 12/24/03-unable to get all the tumor. 8 weeks chemo/rad beginning 1/12/04.
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#38154 01-29-2005 03:30 PM | Joined: Apr 2004 Posts: 482 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 482 | Swati, was sorry to read of your Dad's problems. I pray you and he and your family are comforted and that the Lord cares for you all during this very difficult time.
Regards, Kirk Georgia Stage IV, T1N2aM0, right tonsil primary, Tonsilectomy 11/03, 35 rad/3cisplatin chemo, right neck dissection 1/04 - 5/04.
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#38155 01-29-2005 04:15 PM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Swati,
I am so sorry to read the latest news about your father. I wouldn't presume to tell you what to do, but in the hope that it might help you with your decision, I can offer a few insights from my experience with my daughter Heather. The path she followed with her cancer was somewhat different than your Dad's, but I do see some similarities, so maybe some of what I say will be of some help.
Heather was only 28 when she was diagnosed with SCC of the base of the tongue. She and her husband had a 6 year old daughter and they had just bought their first house, so she had a lot to live for. She was a very strong person and she fought the disease for nearly 14 months with surgery, radiation and chemo.
She was first diagnosed in August 2002. The recurrence was diagnosed in March 2003 and by May her doctors had given up on a cure. They recommended chemo in the hope it would shrink the tumors and give her a little more time, but none of them expected her to survive long. Her condition was severe and she spent 11 weeks in the hospital from early April through late June. Against all odds, she was able to leave the hospital and come home. We set up a hospital bed for her in my living room and a nurse came in once a week to check her vital signs and make sure we were doing everything right.
Heather had severe lockjaw, a tracheostomy, was fed by IV because her digestive system had shut down, was on a constant morphine drip (which only controlled part of the pain) and she was partially paralyzed because the tumor was destroying the vertebrae in her neck. She couldn't talk because of the trach and because of the paralysis, she needed help to do EVERYTHING. The cancer had eaten away a large portion of her neck. She had 2 huge, gaping holes that drained constantly. Even with all this, she kept fighting, but every chemo treatment weakened her more and when the paralysis started to spread, she finally could take no more.
Letting her go was the hardest thing I have ever done. I wanted desperately to find a cure, but in my heart, I knew the doctors were right and there was nothing more that could be done. She was so weak and in so much pain that she eventually couldn't even get out of bed to use the bedside commode. We had to resort to adult diapers until she finally let the nurse put in a catheter. She had no quality of life. The only way to keep the pain at bay was to keep her sedated. She couldn't even make an effort to talk to her husband or daughter. She had used a write-on wipe-off board to communicate, but in the last couple weeks, she had stopped using that also. She was in a world of pain, both physically and emotionally.
Once she decided to stop fighting, she lasted only a short time. Her spirit had kept her going, but her body was worn out, so it didn't take long.
I agree with Gary that it is time to call in hospice. Maybe they can help manage your Dad's pain better and they can help you to cope. I wish I could offer you hope for a miracle, and I'm sorry that I can't. Only your Dad can decide if he is ready to stop fighting, but you can let him know that you support his decision, no matter what. If he improves enough to continue chemo or some other treatment, that would be wonderful, but you need to be prepared for the fact that he probably won't. Hospice can help your whole family to deal with this. We should have had hospice come in earlier, but Heather didn't want them. I will be forever grateful that we did finally call them. It was only because the hospice nurse was here that I was able to have one last communication with my daughter.
I can't tell you how sorry I am that you and your family have to go through this and I hope that in some small way, I have been able to help.
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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#38156 01-29-2005 08:35 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Swati, all the advice you have been given is excellent. I would add that if you can do it, it might be a great comfort to your father to tell him that it is okay to let go. Different circumstances entirely with my mom, except she too, was kept doped up because of the pain, but when my dad and I finally realized that she would not get better and was fighting only for us, we both told her it was okay to stop, and other personally meaningful things, and she died within hours. We were very sad, but also glad that her terrible battle had finally ended. I felt better that I was perhaps able to set her mind at ease somewhat by letting her know that I would be okay. I am not sure this makes any sense, but it did help our family. You and your family are in my prayers. | | |
#38157 01-30-2005 03:20 AM | Joined: Jan 2004 Posts: 1,116 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2004 Posts: 1,116 | Swati, you are in my thoughts and prayers, I am so sorry to hear this news, I will pray for peace for your Dad. God Bless You, Love, Carol
Diagnosed May 2002 with Stage IV tongue cancer, two lymph nodes positive. Surgery to remove 1/2 tongue, neck dissection, 35 radiation treatments. 11/2007, diagnosed with cancer of soft palate, surgery 12/14/07, jaw split. 3/24/10, cancer on tongue behind flap, need petscan, surgery scheduled 4/16/10 ---update passed away 8-27-11---
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#38158 01-30-2005 05:53 AM | Joined: Oct 2002 Posts: 546 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Oct 2002 Posts: 546 | Swati,
Ditto what Joanna said. The hospice people said sometimes the patient needs to hear from their loved ones that it is okay for them to let go. Even through their pain, they try to hold on for the sake of their family. Make no mistake, it will be one of the hardest things you ever do, but to tell your Dad that it is okay to let go may be the most loving thing you can do for him.
Rosie
Was primary caregiver to my daughter Heather who had stage IV base of tongue SCC w/ primary recurrence. Original diagnosis August 21st, 2002. Primary recurrence March 18th, 2003. Died October 6th, 2003.
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