#50941 09-23-2004 09:26 AM | Joined: Apr 2002 Posts: 13 Member | OP  Member
Joined: Apr 2002 Posts: 13 | I posted a few weeks ago about my husband. He is 2 years out of treatment and it is back with a vengence! Mestastatic disease of brain, lungs, chest. Prognosis is 6 months or less. I am scared, mad and most of all concerned for his quality of life. I hate to post such bad news here because for the past 2 years I have been encouraged by all the good things I read here. I just don't understand. April check up was okay! Our doc never did an scans. Is that normal? Only examined the tumor site(base of tongue) and chest x-rays. The chest x-ray in april showed a "shadow" but doc said nothing to worry about! Has anyone here been through this? I want to do my best to help him get through this, but feel so inadequate. Thanks! | | |
#50942 09-23-2004 09:43 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | DJS-
I am so sorry to hear your news. my heart goes out to you and your husband. I too am just 2 years out of treatment. I have an exam every 3 months but scans only every 6 months. The chest x-ray is now scheduled only once a year. We will have to see from the other 2 year survivors out there what their schedules are like. We are all inadequate in dealing with news like this!! This disease SUCKS!! Just know that you are not alone and we care for you both. We'll walk this journey with you every step of the way! Love - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#50943 09-23-2004 11:12 AM | Joined: Feb 2004 Posts: 372 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2004 Posts: 372 | Hey DJS,
So sorry to hear your news and you both will be in my prayers. Dan had a pretty agressive neck tumor which they could not totally remove by surgery, so they are keeping a close watch on him. He sees the oncologist monthly and the oral surgeon every two months. He has a PET/CT scan every 3 months to keep a close watch on things. There are areas of concern, but nothing other than that right now.
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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#50944 09-23-2004 07:06 PM | Joined: Dec 2003 Posts: 2,606 Likes: 2 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Dec 2003 Posts: 2,606 Likes: 2 | DJS,
I am really sorry for your news. I see my ENT every 6 weeks and moved to 8 weeks after the next visit. I had a PET scan last week at one year and 6 months ago. I had a chest xray last year and last week.
I wish there were words I could say to help you but I don't believe that is possible. Just know I am thinking of and praying for you and your husband. We are here for you in any way we can help you.
God Bless,
Ed
SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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#50945 09-23-2004 09:11 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Nov 2002 Posts: 541 | DJS, sorry about the bad news. I wonder why the doctor was not concerned about the shadow in the chest x-ray in April. Is there negligence? I am always told by my oncologist that our cancer can easily spread to lung, liver and brain. I am in remission for 3 years now and have annual ultrasound scan, MRI,CT scan and chest x-ray. The tests are more frequent in the first year post treatment,at about 3 to 6 months interval. Of course the urgent thing to do now is not to find out why there is the delay in diagnosis, rather to look forward to what can be done to get better prognosis and improve your husband's quality of life. Don't believe in doctor's verdict since I know many patients with strong will can survive much longer than the doctor expects. Never give up.
Karen.
Karen stage 4B (T3N3M0)tonsil cancer diagnosed in 9/2001.Concurrent chemo-radiation treatment ( XRT x 48 /Cisplatin x 4) ended in 12/01. Have been in remission ever since.
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#50946 09-24-2004 12:34 PM | Joined: Nov 2002 Posts: 458 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Nov 2002 Posts: 458 | DJS, I'm also confused about the no follow up scan deal. Most everyone here gets a follow up either MRI or ct, in my case PET/CT every 6 months for the first 3 years or so anyway, and manage a exam every 2-3 months, with chest x-ray every year.
I recently had a chest x-ray that looked slightly suspicious, and the doc did a follow up one real quick with a different view. Follow up confirmed no problems, as there can be some post rad issues with the top apex of the lungs caused by exposure to radiation.
Sorry to hear about your husband's recurrance, we'll all be praying for him. Come here anytime for support if you need it.
Bob
SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
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#50947 09-28-2004 05:41 AM | Joined: Apr 2002 Posts: 13 Member | | OP Member
Joined: Apr 2002 Posts: 13 | Thanks for all of your replies and most of all for your support & prayers. Smitty is having 10 radiation treatments (full brain) and then we will go from there. Right now I am very angry that we did not manage our own care. I knew to ask about scans and did not. He was treated at University Hospital of Cleveland Cancer Center. It was not some little place that does not specialize in cancer! That will be my advise to everyone I come in contact with...be active in your own care. We depend on the "experts" to make the right decisions. I know they are only human and they treat loads of patients and that makes it that more important to be involved in your care. Thanks guys. Keep the prayers coming our way. | | |
#50948 09-28-2004 06:11 AM | Joined: Jul 2003 Posts: 382 Likes: 3 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jul 2003 Posts: 382 Likes: 3 | DJS-
We all worry about the "what ifs" and wonder if we shouldn't have been more agressive with our treatment. Just hearing the word "cancer" puts most of us in a tail spin. Faith is hard to come by with so much hitting you, just know that many people are praying for you and Smitty right now!! - Kris
SCC Stage IV left tonsil neck disection 3/02 radiation finished 6/02 chemo finished 9/02
Stage 2A left breast cancer 3/09, chemo and radiation, finished treatment 2/7/10 -Stage 2 right beast cancer 10/14 chemo and radiation
Every day is still a gift :-)
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#50949 09-28-2004 09:40 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 | DJS
Please don`t waste time beating yourself up,we as caregivers are not oncologists and cannot be expected to know everything, you are not alone. Now what matters is his comfort and care. If I had not found this forum my husband would not be as healthy as he is today.
Right here is where I found the BEST information and support. Thank goodness for Brian Hill. Our thoughts and prayers are with you and your family
Take care
Marica
Caregiver to husband Pete. SCC stage IV base of tongue. DX 4/03 finished treatment 7/03
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#50950 09-30-2004 03:02 PM | Joined: Apr 2004 Posts: 44 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Apr 2004 Posts: 44 | DJS-
I will pray for your family and you, pray for comfort, healing (of mind and yes, body), courage, peace and acceptance. Because we love our survivors so much we often focus on their immediate care and ease up when not in "fight for your life this second" mode. I felt like there was something I was actively doing during Ed's treatment to fight the fight - and when the "active" fight was over found that I let up on the pressure to the doctor (probably because I was so drained from the "fight for your life" mode. Don't flog yourself, we all do the best we can and sometimes it doesn't meet our expectations/hopeful outcome. God bless you. I'll pray for specifics.
Susan
Caregiver to Uptown/Ed, SCC Stage IV, Base of tongue - Completed Chemo (Cisplatnin/5FU) and 45 days' simultaneous Radiation 10/08/03
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#50951 10-02-2004 08:56 AM | Joined: Sep 2003 Posts: 139 Gold Member (100+ posts) | | Gold Member (100+ posts)
Joined: Sep 2003 Posts: 139 | Oh DJS, please don't beat yourself up about this. I am so sorry to hear about Smitty's relapse and so sorry for all that you will be going through. Know that you are with "family" here and we are great listeners.
Love and God bless,
Judy U
Judy U
Stage I SCC floor of mouth, left radical neck dissection 8/03
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#50952 10-02-2004 09:35 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Sep 2003 Posts: 1,244 | Hi DJS
No-one can do it all, my husband is in remission for advanced prostate cancer and I'm now recovering from surgery for oral cancer, I know that many of my questions are unanswered because I cannot be all things to both of us,all I can do is my best, but YES I have to trust that the doctors do their best also, and I have to believe that this is what they try to do. So if God is on OUR side we have to win through, as Judy says, we are all "family" here, so stay with us...
Sunshine... love and hugs
Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#50953 10-02-2004 12:10 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Hello DJS,
I am so sorry to hear the news about Smitty's
mestastatic cancer. Please know you have all the love and support you can take from this forum.
Please keep us posted on how things are going.
Many a doctor has been wrong about this before.
Best Wishes for both of you,
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#50954 10-02-2004 06:39 PM | Joined: Oct 2003 Posts: 89 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Oct 2003 Posts: 89 | Scared, angry and incredibly saddened, no wonder. This is a horrible thing. To go from suddenly seeming ok, with no apparent warning, to having the whole earth drop out from under you. I can't describe it. I am touched and feel pain for the 2 of you, yet know that my feelings are not at all what you must be going through. I wish I could find words.
The rambling, unpredictable nature of this cancer is part of what makes it so scarey. It is hard to say at what point the cancer suddenly grew and blossomed. Feeling powerless to the disease, I see the need to question what could we have done differently, should we have pressed for more tests, etc. But the evidence seems to show that the cancer CAN come back and rear its ugly fangs rapidly and unpredictably. It is the fear we at this site live with and dread.
I know many people who have had strentgh and supportive services from their local hospice center to help deal with the issues you must be dealing with now.
Wishing you peace and strength,
michelle
History of leukoplakia <2001-2004. SCC lateral tongue 9/03; left radical neck dissection & hemiglosectomy 10/03, T2-3,N0M0; 28 IMRT radiation completed 12/03. 30 HBO dives Oct-Nov 04 for infections and bone necrosis -mandible.
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