#43610 07-21-2004 05:24 AM | Joined: Apr 2004 Posts: 11 Member | OP Member Joined: Apr 2004 Posts: 11 | My brother had a rad neck in April, and about 6 weeks ago developed a know behind his ear on the same side.
He has 15 radiation txs. left which is hitting it, and it isn't getting any bigger.
He found out today it is cancer.
Is this devistating news...or is there still some hope. Dr. said nothing could be done until after radiation.
Has anyone experienced cancer so soon after a rad neck? | | |
#43611 07-21-2004 06:30 AM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: May 2004 Posts: 80 | dear absmile,
i'm sorry about the news of your brother. my sister's recurrence also showed up before she had finished radiation. hers is on the same side as well. your brother's recurrence seems to have showed a bit too soon, but as i understand, recurrence is quite common in oral cancers and its speed depends on the stage and type of cancer as well as the treatment programme followed.
this is not necessarily devistating news but it is an indication that your brother's cancer is pretty aggressive, and thus the treatment plan may need to be re-evaluated accordingly. this may be a time to consider further and alternative multidisciplinary consultation, which basically means that you get opinions from surgical, medical and radiation oncologists.
recent studies show that radiation is much more effective when combined with chemotherapy. is your brother also receiving chemo? if not, he may want to discuss this with his oncologist. although i'm not sure if they can throw in chemo half-way through the radiation course, it is important that the medical team considers all options and possibilities.
the biggest problem with recurrences on the same side is that if that side has already been irradiated fully, then follow-up chemo will not be as effective (as showed up in my sister's case) and the possibility of further irradiation may also disappear. therefore, the need for timely and comprehensive approach.
i am very cursious to know if your brother had received chemotherapy prior to the surgery?
best wishes for healing and peace.
gita
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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#43612 07-21-2004 12:03 PM | Joined: Apr 2004 Posts: 11 Member | OP Member Joined: Apr 2004 Posts: 11 | Thanks for responding. No my brother did not get chemo.
It's a long story...but he does not have any type of insurance...I hope that hasn't played into the fact of not treating him fully. He has medicaid pending...but was denied and we had to resubmit...it seems as if he is getting the proper care...but everyone is waithing for medicaid approval, I don't know what will happen if he truely gets denied. He lives alon and doesn't have any income right now at all. My sister is paying his bills, so that is a blessing.
It was kind of found in a round about way, and we wound up at a plastic surgeons office (after a oral surgeon refered us) who asked us what insurance he had, when he found out he didn't have any he refered him to a clinic that he volunteers at.
We went to a clinic that is staffed by resident surgeons. He was opearted on by a plastic surgeon in his last year of residency, who was supervised during surgery by an attending plastic surgeon. We felt he did a fantastic job with the surgery and was very caring. We asked him about the know a month ago, and he said he wasn't concerned...that he would watch it. Well then he moved out of state, and now he has a new resident plastic surgeon.
The ps didn't feel chemo was necessary...just the radiation. He doesn't have an oncologist per say, so I don't know who to ask about the chemo. He does have a radiation ongologist. He has another appointment in 3 weeks with the ps to discuss options after he has completed radiation, he does not want to interup the radiation.
He had 43 lymphnodes removed and 3-4 were cancerous. The original ps said he removed all of the cancer he saw. They staed him as 3 something (I am not clear on that).
I hope your sister is ok....did they give you any idea what to expect from here?
Thanks!
Angie | | |
#43613 07-21-2004 02:11 PM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: May 2004 Posts: 80 | angie,
my sister too did not have insurance as she was diagnosed shortly after she'd lost her job. even though she first received treatment at a UCLA facility under the supervision of some big-shot surgeon, i am convinced that there were many errors in the initial approach, which, similar to your brother's case, was devised by a surgeon without comprehensive consultation. and my sister is unfortunately paying the price for it. so much for cancer not being a political topic!
anyway, the current protocol for treatment of oral cancers is to start with chemo and radiation before heading into surgery. you can get more information about this stuff on this site as well as on American Cancer Society and National Cancer Institue sites.
where is your brother? i suggest you post another message on this board to see if other members here may be able to recommend a comprehensive care facility where you can at least get a multidisciplinary opinion. this is very important.
you may also want to check the forum on insurance and finances to see if you might find helpful tips or pointers.
be well.
gita
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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#43614 07-21-2004 03:05 PM | Joined: Apr 2004 Posts: 11 Member | OP Member Joined: Apr 2004 Posts: 11 | Gita... my brother lives in Akron Ohio. I'm curious as to how your sister is dealing with the financial aspect of this. I have a pile of bills that are probably about 10 inches stacked up now. I feel overwhelmed with it. But like I said, we are waiting on medicaid...so hopefully that will come through.
I know what you mean about the initial approach. We didn't even know he was going to have a feeding tube or a tracheotomy until right before surgery. Also, we had NOOOOO idea that his jaw was going to be sawed in half until after surgery when I saw stiches in his lip. But in all fairness, we had an appointment with the dr., and he was probably going to go over this, but they were able to move the surgery up, and we only had a days notice.
What do you mean about a comprehensive care facility? I will definatly ask about chemo. When she had a reoccurance...did they do more surgery?
It is very overwhelming...as you guys know. My brother has a super attitude, although the news today was a set back.
Angie | | |
#43615 07-21-2004 03:50 PM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Angie,
I'm sorry to hear what you and your family are going through -- it's tough having to make some major decisions with very little time to sort things through.
Regarding comprehensive cancer centers -- if you look on this site under "Other Resources" you'll find a lot of helpful links. One of the headings is Cancer Centers, and it lists all the facilities that have been so designated in the country (there are two in Ohio). One of the benefits of a comprehensive cancer center is that you typically get a consensus among specialists in surgery, radiation and chemo as to what is the best course of action in a particular case.
I hope your brother can get to one of these -- it sounds as though the cancer is relatively advanced, and the resources at one of the major hospitals may be what he needs at this point.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#43616 07-22-2004 02:24 AM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: May 2004 Posts: 80 | angie,
we had to deal with my sister's bills too until her medicaid (whatever it is called in california) came through a few months ago. if i understand correctly, they've said they'd reimburse her for what she had paid but i'm not sure if there were any limits and exceptions. i'm sketchy on this stuff cuz i live in canada. but i know how overwhelming medical bills are particularly at a time when you're already stressed by your brother's illness. hang in there and persist with medicaid.
whatever the circumstances, i find it troubling that you did not know what the surgery would entail. it must have been quite a shock for your brother to come to and find half of his jaw gone! the problem with receiving treatment in this fashion is that info gets lost and there is a lack of continuity in terms of who leads the treatment. do look up the comprehensive cancer centres (CCC) in ohio, but if you can't take your brother there for any reason, you may want to at least get second opinions from them. many of these centres also do long-distance consultation with patients and/or physicians.
if a CCC doesn't pan out, then i'd suggest you try to find a medical oncologist for your brother as his primary physician. in my experience, while surgeons typically seem to not be in the habit of consulting with other disciplines, medical oncologists are much more informed and interested in multidisciplinary plans. ask around. you may find a good doctor as we did eventually for my sister.
be well.
gita
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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#43617 07-22-2004 05:43 AM | 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 | Angie,
I am sorry you are having to go through all of this.
The whole financial picture really sucks. The "official" guidelines require you to be totally disabled for at least one year and the medicaid kicks in after two years. The exception is if the doctor stipulates disability will continue for at least one year or the patient is not expected to recover. I have a friend that has esophageal cancer, had most of his stomach removed and chemo with his journey starting in January and by June he had medicaid and disability insurance payments. I am sorry that I don't know if he was diagnosed as terminal and I haven't had the nerve to ask him as I am sure he would offer if he wanted me to know. He was laid off two years ago and before they would approve him, he had to spend all of his life savings and retirement. He paid off everything and paid rent in advance for two years. He used the rest to pay some medical bills and he was reimbursed for all of these as soon as they approved him.
The whole social security process seems so different across the country. You may want to check on disability insurance and disability income if you haven't. It won't be much but it could help.
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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#43618 07-22-2004 08:50 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 | MediCal in California is a little tricky. They will attach the estate or put a lien on real property for reimburement I understand. The people who benefit the most are apartment dwellers with no assets.
My experience had been that, without exception, ALL of the major corporations want to screw you. Credit card companies will not give you a break, nor will just about anyone else. Forget telling them that you hope one of their family members doesn't have to face this -they don't give a sh*t. We have meeting with a lawyer for some time now to file a chapter 13.
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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#43619 07-22-2004 09:43 AM | Joined: May 2004 Posts: 80 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: May 2004 Posts: 80 | slight deviation:
from the perspective of someone who lives in canada and doesn't have to worry much about medical costs but worries a lot about the threat of privatization of our medical care because of nafta, i wish people in the u.s. would push for public health care as a basic right and tenet of citizenship.
i know this is "political" talk that might be prohibited on this board, but, really, there are few personal topics that are as political as health care, and you can't talk about cancer treatment without considering the health care system and its astronomic costs. i find it abhorable that people have to become destitute before they get assistance at a time of such vulnerability while they're dealing with such an illness. i know that this has been a major source of stress for my sister and family as it probably is for most people.
sister diagnosed 11/03 SCC maxilla keratenizing stg IV T1N1Mx; 4-7 positive lymph nodes; dissection 12/03 left upper pallette removd; radiaton left side 35 sessions 2/04-4/04; recurrence same side 4/04; chemo began 5/04 incl cisplatine, 5fu, taxotere
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