#15581 06-03-2004 10:52 AM | Joined: Jun 2004 Posts: 3 Member | OP Member Joined: Jun 2004 Posts: 3 | Hi, My name is LJ and I am the sister of a throat cancer survivor. Unfortunately, my dear brother has a number of other problems besides throat cancer (don't we all) He was diagnosed (after much dawdling by him) In July/August 2001 and started treatment. He went through extensive radiation which lasted into Jan. 02. Once the radiation finished the DR told him to come back for check ups. My brother asked what did the DR think and the DR said well we'll see each other every six months for the next couple of years and then once a year for years after that and then you an I will have a great retirement. Very happy news indeed. The DR also said that if the Cancer were to reoccur there was nothing to be done.
With that news my brother promptly stopped going to see him and has not been back since. Unfortunately, his other problems have been much more pronounced and our family has been trying to assist him through these various and sundry problems.
Just the other day I spoke to him and he confessed that he thought the cancer was back. Same pain as before etc. Of course, I told him to go the DR and of course, my brother is procrastinating.
Here are my questions. He lives in North Jersey any Oral Cancer treatment facilities in the area? Clearly reading a bit about you folks there are numerous things to be done beyond radiation. Secondly, is there anyway to find out what type of cancer he has and what stage. My brother doesn't ask or afraid to tell and the physician won't talk to me. HIPAA UGH!! 3rdly, if not a center is there a good physician anyone can recommend? I get the very strong feeling that the DR greatly recented my attempts at "helping/assisting/bugging" my brother about what I could do to help.
Finally, my brother's biggest grip is he cannot swallow food keeps getting stuck. When he was admitted to the hospital for a related but unrelated incident in May of 03 they supposedly did all kinds of tests and said he can swallow just fine - which is bunk. What would anyone recommend.
Thanks in advance for your help.
LJ Fletcher | | |
#15582 06-03-2004 11:21 AM | Joined: Mar 2004 Posts: 164 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Mar 2004 Posts: 164 | Welcome to the board. I'm sorry your brother has had such a hard time. Memorial Sloan Kettering in New York is an excellent facility. I'm not sure how far that is from him. Even with excellent care, if the patient isn't willing to follow instructions, what's the point.
A barium swallow would be the test that would detect if anything is wrong with his swallowing function. Hopefully it's just a minor problem that can be solved very easily.
I hope you will be able to shake some sense into him.
My thoughts and prayers go with you. Lynn
Stage 3, N0, M0 oral tongue cancer survivor, 85-90% of tongue removed, neck disection, left tonsil removed, chemo/radiation treatments, surgery 11/03, raditation ended 1/04, lung mets discovered 4/04,
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#15583 06-03-2004 11:48 AM | Joined: Jun 2004 Posts: 35 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2004 Posts: 35 | HI, I JUST SIGNED UP TODAY, AND I DONT KNOW EXACTLY HOW THIS WORKS, I HAVE READ SEVERAL OF THE LETTERS AND THEY ARE ALL VERY ENCOURAGING. MY MOM WAS JUST DIAGNOSED WITH SALIVARY GLAND CANCER TWO WEEKS AGO. SHE IS 58 YEARS OLD AND NOT A DRINKER OR SMOKER, SO FAR IN TWO PAST WEEKS SHE HAS BEEN THROUGH TWO NEEDLE BIOPSYS, TWO OPEN BIOPSYS, PEG TUBE, AND THEY ARE GETTING READY TO START HER ON CHEMO/RADIATION. I WOULD APPRECIATE ANY ONE OUT THERE THAT HAS HAD SIMILAR CIRCUMSTANCES TO REPLY. THANKS
jbentonwolfe
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#15584 06-03-2004 01:36 PM | Joined: May 2004 Posts: 137 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: May 2004 Posts: 137 | jbentonwolfe, that is one long name, welcome to our group, I personally have not had the cancer your monther has had, however I am sure that someone on here has. Chemo/radaition is about the same tho. It is ruff on some, others have very little probelms with it. All I can tell you is to be with your mother, she will need you. Get all the info you can so you can help her and you won't be left out. My daughter has gone with me to appts. so she can ask her own questions this is fine with me. We will all pray for you and your mother. Always, Vicki Lynn | | |
#15585 06-03-2004 02:50 PM | Joined: Nov 2002 Posts: 541 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Nov 2002 Posts: 541 | jbentonwolfe, won't it be more sensible if you start a new topic concerning your mom's problem because the topic starter LJ Fletcher has a great concern about his brother's situation and needs advice from others. For easy reading, please do not use capital letters throughout the message. Thank you.
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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#15586 06-03-2004 04:10 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello jbentonwolfe,
Welcome to our world. You have to talk some sense into your brother. The earlier the detection the better his odds. I suggest you have him come on this site and read as much as he can, There are so many different stories that I'm sure he will become aware of the importance of early detection.
He can also post any question he wants to, We offer our experience's and support. We don't offer medical advice. I challange him to find a more valuabe source of informtion about Head & Neck Cancer on the internet than this website.
I joined in July of 03 and was member #853, There are now almost 1400 and it grows daily.
We welcome him with open arms, support and information. Love is a byproduct that comes with it for free. I wish him good health and a long life. Burying his head in the sand is not acceptable.
Sincerly, Dan Bogan
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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#15587 06-03-2004 06:15 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 | LJ, I am sorry you are having to be the catalyst for your brother. That must really be a difficult position to be in. Welcome to our community, nonetheless! We have all been through the same ordeal as your brother and it is a difficult disease to accept. You can have your brother authorize you to have access to his doctors, etc., by signing one simple form. Otherwise, unfortunately, you will be considered an outside just like a total stranger. (Yet another example how the government fails to react and then overreacts.) Your best bet is to get your brother to the site and let him read about others and more about his disease. Some people will not accept the cards the have been dealt and there isn't a lot we can do about it. You can lead a horse to water but you can't manage him to drink. There is so much here in terms of resources and info that could significantly improve his quality of life if he chooses. Here is a link to the National Comprehensive Cancer Center Network: http://www.nccn.org/ You could find the nearest center to where you live. Good luck and your brother is fortunate to have you by his side through this. 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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#15588 06-04-2004 04:05 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | Hi LJ, I WISH I could blow off all those doctors! I have seen more doctors since this business started than in 10 of my precancer lifetimes. Many of us here can relate to procrastination ;-)
To start with take a deep breath and repeat after me:
"God grant me the serenity to accept the things I cannot change, Courage to change the things I can, and the wisdom to know the difference."
The odds of him getting a recurrence at the original tumor site are fairly diminshed after 2 years.
It may be as simple as thrush causing both the pain and the swallowing problems - has he been on a course of antibiotics lately? That would do it. Thrush is easily cured but can be serious if left untreated - maybe you can use this as an excuse to get him to go back to the doctor. Although recurrences can be nasty, it is speculative that "nothing can be done" -don't tell that to the folks here who have survived recurrences. What the doctor said was a real diservice.
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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#15589 06-04-2004 07:03 AM | Joined: Aug 2002 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Aug 2002 Posts: 76 | I am sure jlbentonwolfe did not mean to "hijack" as some of you say this thread. If I was this person I am not so sure I would be posting again. I may have taken the tone of Karens post the wrong way, but after I read it I cringed. We all learn the proper posting, typing procedures etc in time, I think we should be a bit more welcoming towards any new members.
Sherrie wife to Dan, Tonsil cancer survivor, Stage IV diagnosed July/2001
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#15590 06-04-2004 08:53 AM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,912 Likes: 52 | Sherri and the rest..... For sure it happens every week that someone mistakenly puts a new post in the middle of someone else's thread. If I catch it in time (it is the last post in the thread) I can remove it and move it to a new thread for that person and explain to them how this all works... after all, computers, message boards etc. are new to many people. So we try to get people up to speed as soon as possible, but it is inevitable that some poster
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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