1st Oncologist Vist
Comments
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35 questionsGoalie said:Welcome (I guess) to a place you hoped never to be
The good thing is that this is very treatable so have confidence in that. The bad thing is that even if you are lucky in your treatment and get off lightly, it is going to be hard.
What you need to find are the Superthread and the 35 questions. (Perhaps we should include these in the Superthread, eh?) The questions tell you pretty much all that you should ask your doctors and the Thread has links to the discussions about everyone's experiences with everything from neck burn to nausea and dissections to disability. The collective wisdom as it were.
And, as others said, just talk to us about your hopes and your fears. We have all had these. Also, encourage your caregiver to get on the Caregiver side. This was a lifeline to my wife who probably suffered more during this than I did and who was truly heroic. Me, I just had to put up with the treatment. Doug
I did find the superthread (thanks sweets) but what are the 35 questions you referrred too
Linda0 -
Debbie,jim and i said:You stated that your
You stated that your family is far away. Do you have someone close to help you with the paperwork and scheduling? Sweetblood had to do it alone and I know it must have been stressful for her. Jim says he could not handle the treatment if I wasn't here to handle everything else. We too were anxtious to get started with treatment. Eventually everything will settle into a routine so hang in there. I had many concerns and questions [still do] and the great people on this site really helped and supported us and still do. Welcome! Contact me any time. I am praying for you.
Blessings
Debbie
To answer yes, I
Debbie,
To answer yes, I have some great co-workers and friends here in AZ that can help, and hopefully, I will be able to handle some myself. In looking thru this site ( maybe I just missed it) do you know if there are any listings for H&N cancer groups by state or locations?
Linda0 -
WiFiosmotar said:Thanks again, for the port
Thanks again, for the port info, all in all it's probably for the best I have small veins that roll..so anything that eliminates sticks works for me. What I like about my onco was that during the conversation, apparently she could she that deer in the headlight look in my eyes, she put her arm around my shoulder and said Linda , I know that this is a lot of sh*t to take in at once, right then I immediatley liked her. My daughter wants to know if the doc office has WiFi, since she is in Maryland , I'm in AZ, she told me I should tell the doc we should skype my office visits.
Internet is not available in my MD's Office's.....
But the actual Chemo Center's where I had treatment and spent a good portion of the day's of Chemo did....
Best,
John0 -
SPOHNCosmotar said:Debbie,
To answer yes, I
Debbie,
To answer yes, I have some great co-workers and friends here in AZ that can help, and hopefully, I will be able to handle some myself. In looking thru this site ( maybe I just missed it) do you know if there are any listings for H&N cancer groups by state or locations?
Linda
Is an acronym for Support for people with head and neck cancer. I attend group at a chicago chapter. You may also find some related services at these location as most are cancer centers. Things like lymphedema therapist and psychological services with an expertise in cancer. Here are the Arizona locations:
Cancer center Chandler regional Med Center
1st wednesday of the month
Monica 480-728-3613
**** 480-895-6019
Phoenix
banner desert Medical center
3rd wednesday
Keri 480-512-3627
**** 480-895-6019
St Josephs
1st tuesday
Mary 602-406-3882
Barbara 602-401-8131
**** 480-895-6019
Scottsdale
3rd thursday
Chris 602-312-9226
Sandy 480-838-5194
les 602-429-11920 -
35 questionsosmotar said:35 questions
I did find the superthread (thanks sweets) but what are the 35 questions you referrred too
Linda
Those not knowing what to ask; you can use these as a base.
Please add to it...
1. We know the cancer is Squamous Cell Carcinoma. It was in his right tonsil, right neck and lymph nodes. Are there any other sites (from PET Scan) that show cancer?
2. The cancer in the Lymph Nodes is it also Squamous Cell Carcinoma or is it considered Lymphoma?
3. There are various types of head/neck cancer. Exactly what type of cancer is this so that I can look it up? (example – is it throat?)
4. Is the cancer HPV positive & if so which type of HPV? *Note- more than likely, they can't answer this for a few weeks...usually the biopsy is sent out to differing lab & may take 2-3 weeks before it came back HPV+.
5. How often do you see this type & how many have you treated with my type and location of Cancer? *Note- If not experience ask if there is someone at that location that he would recommend
6. Is his cancer curable?
7. What are the survival rates? 5 year, long term?
8. What are the chances of recurrence or new cancer?
9. We know that he is going to have Chemotherapy and Radiation; can you tell us what Chemotherapy drugs you will use?
10. Will the chemo and radiation be done at the same time?
11. Will he be hospitalized at any point for Chemo/Radiation; or will it be done as an outpatient?
12. Will the Chemo drugs be given by mouth or IV? *Note- you might also add the power port to your method of delivery.
13. What is the approx. recovery time & What do you feel are the most common side effects I can most likely expect?
14. What are his other options for treatment?
15. Will you change the treatment if he is not responding?
16. Is there a clinical trial for this type(s) of cancer?
17. If clinical trial, ask what phase. Also ask if it’s randomized and if placebo given.
18. When the cancer was biopsied, did they do Genetic Tumor Profiling to see if he can do targeted chemotherapy?
19. What type of radiation will he need? How many radiation sessions?
A. Do you offer Tomotherapy or Cyber Knife?
20. Can we have a copy of the pathology report and copies of protocol?
21. What is the histology & cell type of the tumor?
22. What is his current prognosis?
23. What is the 5 year prognosis?
24. Does he have any bad prognosis factors?
25. Is follow-up treatment necessary? What does it involve?
26. Will I need a feeding tube and what type of Dr do we need to care for it? *Note- Some use a general surgeon; while others use a gastro
27. We would like to see a nutritionist; do you have someone you can recommend?
28. How do you feel about complimentary therapy such as Vitamin C drips?
29. Will you be the one managing any pain he has?
30. Will I have to come to the office to pick up prescriptions if there is a pain medication change?
31. Since we live in another state, should we look for a pain management Dr in our area?
32. He has been having problems sleeping. Are you able to prescribe something for him to sleep?
33. Do you have a dentist the specializes in evaluating my teeth before treatment starts? *Note- radiation is damaging to the jaw/teeth; some will need teeth extracted & should be evaluated by a dentist that knows what to look for.
34. Do you use a speech pathologist on your team? If not we need to get one that has had radiation experience of the head and neck
35. Do you have a Social Worker that can help me with financial aid and or short or long term disability help?
*Note- If HPV positive in male; female may want to see her GYN to have an HPV test. Males can not be tested for HPV. HPV can be carried for 30 years0 -
Inforatface said:SPOHNC
Is an acronym for Support for people with head and neck cancer. I attend group at a chicago chapter. You may also find some related services at these location as most are cancer centers. Things like lymphedema therapist and psychological services with an expertise in cancer. Here are the Arizona locations:
Cancer center Chandler regional Med Center
1st wednesday of the month
Monica 480-728-3613
**** 480-895-6019
Phoenix
banner desert Medical center
3rd wednesday
Keri 480-512-3627
**** 480-895-6019
St Josephs
1st tuesday
Mary 602-406-3882
Barbara 602-401-8131
**** 480-895-6019
Scottsdale
3rd thursday
Chris 602-312-9226
Sandy 480-838-5194
les 602-429-1192
Thanks so much for this information
Linda0 -
More questions
For those of you that found a lump in your neck, I first found mine at the beginning of April, it was a small nodule under the skin, now it has grown and is apparent under my right jaw and into my neck...did this happen to anyone else and if so was it some what hard ( not rock hard) to the touch, did it get harder when you did a lot of talking or chewing?
Did anyone experience earache symptoms on the same side as the throat lump?
Hair loss....when and how...what did you do? How soon into chemo can I expect to loose hair, I'm hoping that doesn't happen..but want to be prepared0 -
Hair and suchosmotar said:More questions
For those of you that found a lump in your neck, I first found mine at the beginning of April, it was a small nodule under the skin, now it has grown and is apparent under my right jaw and into my neck...did this happen to anyone else and if so was it some what hard ( not rock hard) to the touch, did it get harder when you did a lot of talking or chewing?
Did anyone experience earache symptoms on the same side as the throat lump?
Hair loss....when and how...what did you do? How soon into chemo can I expect to loose hair, I'm hoping that doesn't happen..but want to be prepared
Doug's on a flight to Mexico, so I'll answer for him:
His lump was a bit farther down his neck and was firm but not rock-hard. Antibiotics did bring down the swelling a bit, leading us to hope it was just an infected node at first - your swelling with activity might be a result of the lymph node trying to do its job while getting squished between the tumor inside and your bones/skin outside. Doug didn't have much in the way of earaches then, but got them after the node was removed (after treatment finished) because of the swelling in that area.
He did not lose hair from chemo (Cisplatin) but did lose hair in the irradiated area - ears, nose beard and the lower back of his head (covered up the latter by letting his hair grow over it). It all came back.
He might have had some hair loss when he was not eating, but that seems to be coming back as well (same with me, actually - my daughter was braiding my hair a few months back and noticed I had a bunch of new growth all over - about 4 months worth).
When you find out what course of chemo is recommended, you'll know more. Likely as not, you will not look as if you are undergoing cancer treatment to most folks.0 -
Hair Lossosmotar said:More questions
For those of you that found a lump in your neck, I first found mine at the beginning of April, it was a small nodule under the skin, now it has grown and is apparent under my right jaw and into my neck...did this happen to anyone else and if so was it some what hard ( not rock hard) to the touch, did it get harder when you did a lot of talking or chewing?
Did anyone experience earache symptoms on the same side as the throat lump?
Hair loss....when and how...what did you do? How soon into chemo can I expect to loose hair, I'm hoping that doesn't happen..but want to be prepared
I lost pretty much all of my hair (everywhere).....the one's you wished you didn't have are the first ones back, LOL...figures.
Mine was from the Cisplatin, Taxotere and 5FU (three week cycles), somewhere around the 4 - 5th weeks. I even lost the majority of my toe-nails...finger-nails just became really brittle.
It did pretty much start growing right back though. Other than like mentioned, from the radiation. I have a small strip at the base of the hairline on my neck, and most under my chin and throat on both sides that didn't grow back.
JG0 -
another question
Seems like when I have a free thought away from what i'm supposed to be doing at work..my mind takes a detour, and again I appreciate all the feed back you all have provided so far.... I have a scheduled dentist appointment this saturday, was on the schedule long before this, what do you suggest I discuss with him and what was any of your dentist feedback while going thru chemo or radiation?
Linda0 -
not sure I like the nailSkiffin16 said:Hair Loss
I lost pretty much all of my hair (everywhere).....the one's you wished you didn't have are the first ones back, LOL...figures.
Mine was from the Cisplatin, Taxotere and 5FU (three week cycles), somewhere around the 4 - 5th weeks. I even lost the majority of my toe-nails...finger-nails just became really brittle.
It did pretty much start growing right back though. Other than like mentioned, from the radiation. I have a small strip at the base of the hairline on my neck, and most under my chin and throat on both sides that didn't grow back.
JG
not sure I like the nail part, but heck not having to shave my legs , whats not to like about that :P0 -
I took this off the HNC Superthreadosmotar said:another question
Seems like when I have a free thought away from what i'm supposed to be doing at work..my mind takes a detour, and again I appreciate all the feed back you all have provided so far.... I have a scheduled dentist appointment this saturday, was on the schedule long before this, what do you suggest I discuss with him and what was any of your dentist feedback while going thru chemo or radiation?
Linda
DENTAL ISSUES AFTER RADIATION FOR HNC:
-----------------------------------------
Osteoradionecrosis of the Mandible
Talks about ORN and whether HBOT work when having to extract teeth after radiation. Some pictures, you may not want to see if you are squeamish.
IMPORTANCE OF A DENTAL APPROACH IN HNC THERAPY
RADIATION THERAPY AND ORAL CARE
Tooth removed today POST radiation
ORAL HEALTH
SIDE EFFECTS OF RADIATION FOR HNC0 -
Thanks sweetBsweetblood22 said:I took this off the HNC Superthread
DENTAL ISSUES AFTER RADIATION FOR HNC:
-----------------------------------------
Osteoradionecrosis of the Mandible
Talks about ORN and whether HBOT work when having to extract teeth after radiation. Some pictures, you may not want to see if you are squeamish.
IMPORTANCE OF A DENTAL APPROACH IN HNC THERAPY
RADIATION THERAPY AND ORAL CARE
Tooth removed today POST radiation
ORAL HEALTH
SIDE EFFECTS OF RADIATION FOR HNC
Thanks sweetB0 -
After the chemo treatmentsSkiffin16 said:Port
The port's not that big of a deal....
They do put you under as an outpatient to insert it (or did me anyways)....
Here's a photo, 2 1/2 years since they put it in, should be getting it out in a month or so.
Power Port
You can barely see the scar and shadow next to the heart shaped freckle, t's a small quarter sized bump.
The port makes it easier for the chemo as they can use a pump and infuse it faster than the standard IV.
It's used for hydration and they can draw blood also through it...power port works both ways injecting/drawing...
You just have to get it flushed every 6 - 8 weeks after treatment..which they do each time the access it.
The pin that they insert in it for chemo stings pretty good for a minute or so, but then you don't feel it.
Nice thing on the port, nothing hanging out, it's all under the skin. So when you're done, they flush it, stick a bandaid on it and you're good to go.
Best,
John
After the chemo treatments were you able to drive yourself home or did you have to hitch a ride?0 -
Everyone Is Differentosmotar said:another question
Seems like when I have a free thought away from what i'm supposed to be doing at work..my mind takes a detour, and again I appreciate all the feed back you all have provided so far.... I have a scheduled dentist appointment this saturday, was on the schedule long before this, what do you suggest I discuss with him and what was any of your dentist feedback while going thru chemo or radiation?
Linda
We are providing you all of the answers to your questions, but remember, "Everyone Is Different"....
You might get one or two or these side effects, all of them, or none...you just don't know.
A lot on here had no problems as for the nail issues I mentioned, a few did....
Some lost all of their hair like I did briefly, some none, and others in-between.
Same with dental, depends on how your teeth are now. Some were advised to have all of their teeth pulled prior to treatment (and did). Some like me just had a good check up, a few repaired that needed minor fillings and some even less.
The teeth are something that you definitely need to maintain and keep up on. With lower production or virtually no saliva, your teeth are more prone to decay and damage.
A good dentist will set you up on some kind of flouride regime', frequent check-ups, etc... Some have had to go through hyper-barric oxygen treatment for tooth extractions after rads. The lower jaw takes a big hit from the radiation. This usually tends to reduce blood flow to that area, making healing harder and more susceptible to infection.
Not everyone has had to go this route. While I have had a crown added, I haven't had anything else....someone (I think Canjun) had a lower tooth extracted with no problems if I remember correctly.
Anyways, check out Dawn's links....
Best,
John0
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